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Washington Post: With his son terribly ill, a top scientist takes on CFS

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
With his son terribly ill, a top scientist takes on chronic fatigue syndrome - The Washington Post
by Miriam Tucker

Terrific article about Whitney Dafoe, his father the Stanford scientist Ron Davis and the lack of research funding.
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.

The basic scientific approach:
Ron Davis said:
“It’s probably the last major disease that we don’t know anything about. . . .

...“My plan is to collect more data on a group of patients than has ever been collected on a human being before, by orders of magnitude. . . . We’re going to be state-of-the-art on everything,” Davis says.


Whitney's sister said:
“I used to talk to him every single day, and I now can’t even make eye contact or give him a hug. . . . He’s still there, but I’m grieving for him like a death,” Ashley, 27, said at the fundraiser.

“He used to say, when he could still talk, that he wished he had AIDS or cancer, because then people wouldn’t tell him that there was nothing wrong with him and he would at least know what was wrong with him.”
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Great stuff, in an influential paper, too. Thanks, Simon.

All - please click on the link to the page, and get your friends to do the same, see if we can get it onto the 'most read' list (which brings a lot more attention to the article).

If anyone wants to comment on the article on the WP site, it looks like you can sign in with an Amazon account.
 

Helen

Senior Member
Messages
2,243
Thanks @Simon. Too sad to read, but hopefully something good will come out of this. I do hope it will do in time to save him and others.

" “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.

Whitney has extremely low levels of several small molecules associated with energy metabolism. He also has three mutations in a gene that codes for an enzyme that helps convert folate and vitamin B12 to their active forms, a process necessary for both metabolic and immune function.

Such mutations are present in about 5 to 10 percent of the general population, but Kogelnik has been finding them at much higher rates among his ME/CFS patients. "
 

dannybex

Senior Member
Messages
3,555
Location
Seattle
It is a great article, great exposure for our illness, but I wish they would switch the placement of the first photo with the 2nd, which shows his severe condition.

Most people these days only glance at a headline and picture quickly before deciding to read on -- and in this case, if they do so -- they'll see the headline, but then see a happy, smiling young man, and perhaps not read any further.
 

Gingergrrl

Senior Member
Messages
16,171
Just read the article and even though I knew the situation and history, it is still very incredibly sad. Agree with @dannybex that the pictures should have been in reverse order or at least side by side.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
While it is correct that the IOM definition of SEID largely relies on subjective complaints, core components of each of the five categories of symptoms are objectively measurable, including post exertional malaise. Objective testing can be done, and has been available since 1940 (the Tilt Table Test), followed by other tests through the years. These establish the veracity of the core symptom, with accuracy and objectivity.

Its not just a matter of symptoms. Yet most doctors do not use any of the needed tests.

I just added the above comment.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
All - please click on the link to the page, and get your friends to do the same, see if we can get it onto the 'most read' list (which brings a lot more attention to the article).
Maybe it even peaked at number one...
upload_2015-10-6_9-47-54.png


Some very good comments on that article. Very good thread on there.
All in all, this has been excellent.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Great to have this exposure!
Dr Davis and his team have all the talent and motivation needed to make serious headway, and they have enough money to have started their work too. I really hope others donate to the cause (see my signature below) and the NIH finally get behind them.
 

ballard

Senior Member
Messages
152
For the people who call ME/CFS an invisible illness, I think they need to take a good look at the 250,000 ( at least) Americans who live in darkened rooms, completely unable to help themselves. They should also take a look at the people in wheelchairs or the homeless people with ME/CFS who can’t afford a place to live because they are unable to work. Many of us can pass as healthy, but for some, it’s perfectly obvious, to anyone who cares to look, that they’re really sick.

Invisible.png
 

Kati

Patient in training
Messages
5,497
For the people who call ME/CFS an invisible illness, I think they need to take a good look at the 250,000 ( at least) Americans who live in darkened rooms, completely unable to help themselves. They should also take a look at the people in wheelchairs or the homeless people with ME/CFS who can’t afford a place to live because they are unable to work. Many of us can pass as healthy, but for some, it’s perfectly obvious, to anyone who cares to look, that they’re really sick.

View attachment 13022
Tweeted this image with text:

Hidden in plain sight. Millions of us with #mecfs agencies and gov looking the other way @NIHDirector@NIH#BIOETHXpic.twitter.com/l3KUdNbQUO

Feel free to retweet, copy and paste, etc...
 

Kati

Patient in training
Messages
5,497
@ballard I had no idea it was yours. Well done, it's awesome!!!

i posted it because there was a signature on the image, and thought it was worthy of sharing. I hope you didn't mind.

And by all means, if you have more of these artwork with powerful message (even those wiht smaller messages) please share them and I will share them on social media and other will share them too. Often times illustrations mean a thousand words.

Please let me know if you want further recognition in tweets, etc.
 
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