You may remember last year how I battled between going to see Dr. Kogelnik or Dr. Chia in California and ultimately chose the latter (and made a mistake, I think. Who knows, maybe I’ll take another trip). Dr. Kogelnik is featured in the above video and so is Whitney Dafoe, a severely ill ME/CFS patient whose father, Ron Davis, a genetics researcher at Stanford University, is looking for molecular biomarkers in this disease. Their story was featured in the Palo Alto Weekly last month (scroll to page 20).
Here is a BBC radio interview with Ron Davis talking about Whitney (under 6 minutes).
From Forgotten Plague on Facebook:
Click to access 2015_07_10.paw.section1.pdf
Dr. Davis founded the Chronic Fatigue Syndrome Research Center (CFSRC) and recruited Nobel laureates James D. Watson, PhD and Mario R. Capecchi, PhD among others as collaborators on a ME/CFS research effort akin to the Human Genome Project, which he was instrumental in starting.
More information on severe M.E., research projects and how you can help can be found here.
It is so frustrating when you feel you’ve made a mistake in doctors. It’s even more frustrating that trips to many, many, many doctors are needed to figure out anything. Thanks for posting this video. It is helpful for suffers, and caregivers alike to see some of what it’s like to have chronic fatigue. Is your case as severe as Whitney’s?
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Oh no, Michelle, not at all. I’m housebound, but able to care for myself and get to doctor appointments etc. I kind of knew Dr. Chia would be a mistake, but I wanted to prove to myself that traveling was possible. Thank you for the comment!
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It’s a very good reminder that the most severelly chronically ill patients are invisible. For every person who is able to make it out that day, there is another person who couldnt. Because so many are housebound, they become invisible, and forgotten. I felt so much for the parents, whose lives had essentially ended, and it must break his heart to know that.
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Karen, so true. I feel like I’ve disappeared from life, but I could never comprehend the level of isolation when you can’t even look at social media. let alone talk to family or see doctors. It is incredibly scary.
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