[bimg=fright|no-lightbox]https://img.washingtonpost.com/rw/2010-2019/WashingtonPost/2015/10/01/Health-Environment-Science/Images/CURESEARCH031443726911.jpg?uuid=v2DMCGhwEeW9tmhh9FISBQ[/bimg]Big kudo's to the Washington Post publishing this excellent article by Miriam Tucker. Miriam flew out to Palo Alto to attend the Davis's fundraising event for their severe ME/CFS patient study. It was immediately clear from talking to her (I was there) that she was very sympathetic to the plight of people with ME/CFS and the low funding and support they get.
How nice as well that this article shows up in the Washington Post not long after the NIH was presented with two federally funded reports stating that much more needs to be done for this illness, and as discussions are underway (we are told) that could result in ME/CFS moving to an Institute. It's a timely article. You never know the impact something like this can have.
It provides a poignant picture of Whitney's fall from a healthy, vibrant young man to someone who is probably at this point simply struggling to survive.
Thank god she mentions the low funding in the article
I love how she handled Whitney's severe, severe case of ME/CFS. Right to the heart of the matter she went.
Dr Kogelnik comes in with with some great quotes
We also find out that Whitney has extremely low levels of the molecules associated with energy metabolism. This apparently refers to the amino acid tests Whitney took. Some of his amino acids associated with glutathione (I think....) were magnitudes lower than they should be. That could, if we're lucky end up being a biomarker for ME/CFS.
Very well done by Miriam! Please read the article and give it press so that the feds notice and so the Washington Post feel's compelled to do more.
How nice as well that this article shows up in the Washington Post not long after the NIH was presented with two federally funded reports stating that much more needs to be done for this illness, and as discussions are underway (we are told) that could result in ME/CFS moving to an Institute. It's a timely article. You never know the impact something like this can have.
It provides a poignant picture of Whitney's fall from a healthy, vibrant young man to someone who is probably at this point simply struggling to survive.
Thank god she mentions the low funding in the article
I love how she handled Whitney's severe, severe case of ME/CFS. Right to the heart of the matter she went.
Then there's the wonderful lead-in to the work Ron Davis - Whitney's father is doing...“It’s hard to explain how fragile he is,” says his mother, Janet Dafoe.
This isn’t 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.
.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 it’s partially or wholly psychological.
Some may therefore be surprised that the illness is now a major research focus for one of the world’s leading biomedical scientists.
That scientist, Ronald W. Davis, is Whitney Dafoe’s father
Dr Kogelnik comes in with with some great quotes
In fact, says Andreas Kogelnik, the infectious-disease specialist who diagnosed Whitney with ME/CFS more than a year after he returned from India, “this was a vibrant, successful young man. . . . His only depression was that he had to stop doing the things he loved to do.”
and
“He has some of the classic symptoms that we talk about with ME/CFS, but in him they’re amplified 10 or 100 times,” adds Kogelnik, president and founder of the Open Medicine Institute, the research/clinical institution affiliated with the fundraising foundation.
We also find out that Whitney has extremely low levels of the molecules associated with energy metabolism. This apparently refers to the amino acid tests Whitney took. Some of his amino acids associated with glutathione (I think....) were magnitudes lower than they should be. That could, if we're lucky end up being a biomarker for ME/CFS.
Very well done by Miriam! Please read the article and give it press so that the feds notice and so the Washington Post feel's compelled to do more.
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