As we end 2015, we know many are still suffering. One ME / CFS patient has received lots of news media attention this year. And now we have a plea from his father, the director of our ME / CFS Scientific Advisory Board, Ron Davis, PhD:
My son Whitney woke me this morning to inform me that he is dying. Whitney has severe Chronic Fatigue Syndrome (CFS).
He did not say he is dying – he cannot speak.
He did not write he is dying – he cannot write.
He used scrabble tiles to spell out his message. I did not answer him – he cannot tolerate anyone speaking to him.
The note said he is willing to go to the hospital even though the experience will be unbearable – hospitals are totally naïve on how to treat CFS patients because of years of denying the existence of the disease. We need to surgically insert a feeding-tube into his small intestine because he cannot eat.
This tells me I am running out of time. I must find out soon what is causing the disease and how to cure it. I know I’m not the only one working on this disease, but there are too few researchers, too few medical specialists, too little research funds and too many patients. I know I or someone can figure this out. It requires a lot of new data and a lot of thinking. For the past 2 decades, I have been involved in innovation of medical technology and automation to generate massive amounts of Human data (BIG DATA) but how do we speed up the thinking?
I spend more than half my time thinking about this disease, comparing the limited data on CFS and many other diseases. I try to track back the symptoms to a possible molecular mechanism. The brain and gut problems could be caused by dysfunctional mitochondria (the organelle for energy generation in every cell) but what is the molecular reason for the dysfunction. Given there are over 1600 genes involved in mitochondria, this is a daunting task. I work on this 7 days a week and will continue to do so until we have an answer, but we need your help to fund it for the millions suffering.
Ron Davis, OMF Scientific Advisory Board Director
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