Wash Post Article Highlights Whitney Dafoe and Severity of Chronic Fatigue Syndrome

Cort

Founder of Health Rising and Phoenix Rising
Staff member
[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.
“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.
Then there's the wonderful lead-in to the work Ron Davis - Whitney's father is doing...

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.
 
Last edited:

Cort

Founder of Health Rising and Phoenix Rising
Staff member
[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 Miriam Tucker for flying out to Palo Alto to attend Ron Davis's fundraiser and to the Washington Post for publishing this excellent article 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.

Then there's the wonderful lead-in to the work Ron Davis - Whitney's father is doing...

.
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.
This is what I wrote

Thanks to the Washington Post and Miriam Tucker for this wonderful article

The Washington Post is well known, of course, for it's investigative reporting and it's track record of producing breaking news and if a million people with a disabling disease that get less funding that hay fever is not worthy of investigative reporting I don't know what is.

Several studies have found that the quality of life and ability to function for people with chronic fatigue syndrome is lower - and not just a little lower but significant lower - than people with heart depression, lupus, cancer and depression.

This is a disease that kicks people in the teeth harder than just about any other. The statistics are all there - the studies have been done - many of them funded by the federal government - yet it continues to treat this often highly disabling disease as if it was a sore throat.

Whitney's is just one of many stories. Dip your toe into an ME/CFS Forum and you will find story after story of ruined health, lost careers and unconsionable neglect from the health profession. I know of one young man - a weight lifter and professional trainer who is now bedbound.

The medical community does not understand these patients and sadly instead of trying to understand them turn away from and dismiss them. Historically - from multiple sclerosis to autism - that's pretty much been par for the course. It cannot, however, keep turning it's head away and still operate with integrity.

Whitney and people like him deserve better.
 
Last edited:

Hello!

Well-Known Member
This is what I wrote

Thanks to the Washington Post and Miriam Tucker for this wonderful article

The Washington Post is well known, of course, for it's investigative reporting and it's track record of producing breaking news and if a million people with a disabling disease that get less funding that hay fever is not worthy of investigative reporting I don't know what is.

Several studies have found that the quality of life and ability to function for people with chronic fatigue syndrome is lower - and not just a little lower but significant lower - than people with heart depression, lupus, cancer and depression.

This is a disease that kicks people in the teeth harder than just about any other. The statistics are all there - the studies have been done - many of them funded by the federal government - yet it continues to treat this often highly disabling disease as if it was a sore throat.

Whitney's is just one of many stories. Dip your toe into an ME/CFS Forum and you will find story after story of ruined health, lost careers and unconsionable neglect from the health profession. I know of one young man - a weight lifter and professional trainer who is now bedbound.

The medical community does not understand these patients and sadly instead of trying to understand them turn away from and dismiss them. Historically - from multiple sclerosis to autism - that's pretty much been par for the course. It cannot, however, keep turning it's head away and still operate with integrity.

Whitney and people like him deserve better.
Great response, Cort. I can even see it!
 

Crappy

New Member
From the sound of what's going on with his health, he needs Cholestyramine like yesterday. In my experience Neurotoxins in high concentrations will cause MCS symptoms. No one is going to help this guy by putting more stuff in him; he needs stuff taken out. To bad it's unlikely he will find anyone to get him on it.
 

Get Our Free ME/CFS and FM Blog!



Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top