Posted on 10/07/2015 12:59:44 PM PDT by Seizethecarp
Before he got sick, Whitney Dafoe was an award-winning photographer and a world traveler. But now, at 31, Whitney lies in bed in a darkened room in his parents home, unable to talk, walk or eat. This isnt the picture that people imagine when they hear chronic fatigue syndrome, which is often viewed by the public and the health-care community as a trivial or primarily psychological complaint.In a February report, the Institute of Medicine gave the illness a new name systemic exertion intolerance disease. Many patients have long criticized the name chronic fatigue syndrome for not reflecting the seriousness of the illness. The new name, some say, is not much of an improvement. Some patients call it by an older name, myalgic encephalomyelitis. Most official documents refer to it with a compromise term, myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS.
The IOM report notes that doctors often lack understanding of the condition and are often skeptical that it is a true medical condition, believing instead that its partially or wholly psychological.
Some may therefore be surprised that the illness is now a major research focus for one of the worlds leading biomedical scientists.
That scientist, Ronald W. Davis, is Whitney Dafoes father.
Davis heads the Genome Technology Center at Stanford University. In the 1970s, he developed techniques for gene mapping that were later used in the Human Genome Project, for which he was a co-investigator. In 2013, the Atlantic magazine named him one of Todays Greatest Inventors, along with such people as Vint Cerf, sometimes called the father of the Internet, and Elon Musk, one of the founders of electric-car company Tesla Motors.
(Excerpt) Read more at washingtonpost.com ...
I haven’t experienced that particular treatment, but the ozone water alone was a night and day difference for me.
Makes sense. I’m still learning about it. I learned enough to know there wasn’t a real downside to trying it, so that much I know, but I’m trying to understand the rest as I go. :-)
Another interesting story and info:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
Maybe not all, but some cases are indeed caused by chronic Epstein-Barr infection. You can test for that virus.
The therapy is immune globulin. Some years ago you could get it as an injection and was easy to administer and not horribly expensive.
Now it is very expensive, you need to get it as IVIG, administered by a nurse, but you can also get it as subcutaneous IG, that you can administer yourself, after being shown how to, by a nurse. Insurance most likely doesn’t pay for it.
Naturally, this is just some info, not medical advice. Consult with your physician.
My doc finally gave me an RA diagnosis, and I started meds with helped a bit, but nothing really significant. I started the Autoimmune Protocol Diet and it has made a significant impact. It's really tough starting out, but it's worth it since I've regained some energy and haven't had near the flare ups. It allows you to find a diet that works and helps rebuild your digestive tract. It's worth a try if you suffer from any type of autoimmune dysfunctions.
Thanks for thinking of me! I am not as bad off as this man’s son, but I am sure glad that a man with big bucks is putting money behind research into our illness!
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.