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The puzzle solver - Stanford Medicine article about Ron Davis / Whitney Dafoe

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Wow. This is heartbreaking.

This is very comprehensive and powerful article.
Very much worth reading.

Read here:
http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html



excerpt:
The puzzle solver
A researcher changes course to help his son

By Tracie White
Photography by Timothy Archibald

For three years, Whitney Dafoe’s world has been a darkened room at the end of a hallway in the back of his childhood home. An insidious disease, one with no known cause or cure, has slowly stolen his life from him, turning his body into a prison.

He doesn’t eat. An IV line delivers nutrients and liquids and medicines to keep him alive. He doesn’t speak. He’s unable to write. Any motion exhausts him. Eye contact hurts him. He can’t bear to be touched.

Last December, in desperation, he used Scrabble tiles to communicate, laboriously lining them up to spell out: CANT TAKE CARE OF MYSELF; DONT KNOW WHAT TO DO. At the end of the month, emaciated due to his inability to digest food, he selected five final tiles and spelled out: D, Y, I, N, G. Then he rang a bell for his father...
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Superb article.

Stanford Medicine said:
“If you look at Whitney’s metabolic testing, it’s amazing that his body works at all,” Davis says. Of the 700 measurable biochemicals or “metabolites” plotted on the chart — including amino acids, carbohydrates, lipids and nucleotides — Dafoe has abnormal levels of 193. “Maybe low metabolite levels are keeping him sick?”

Like Crosby, Davis thinks the energy production system holds a promising clue. He spends a lot of time pondering the inability of the energy-producing structures within his son’s cells, the mitochondria, to do their job.

“Everything points to dysfunctional mitochondria,” Davis says. “But what is the molecular reason for the dysfunction? Given that there are over 1,600 genes involved in the workings of mitochondria, finding what’s wrong is a daunting task. Some kind of infection or trauma or stress might trigger a series of events that causes the body to go into an altered state.”

Davis suspects the answer to the CFS riddle lies somewhere in its molecular underpinnings. In his lab, researchers are looking for answers in the metabolic system. But he’s exploring all possibilities; other scientists he’s recruited — from Stanford, the University of Utah, Harvard University, the University of California-San Diego and other schools — are lending their expertise to investigate other systems of the body, including the immune system and the nervous system. So far, Dafoe’s blood samples are guiding this exploration — his entire genome has been sequenced.

“New technology is allowing us to cast a really big net,” says Mark Davis, PhD, professor of microbiology and immunology at Stanford, who is scanning Dafoe’s infection-fighting T-cells for abnormalities, as well as looking at other aspects of the immune system. “Some would call it a fishing expedition. But fishing expeditions also catch fish.”

The hope is that results from the newly launched trial of 20 severely ill CFS patients from Open Medicine Institute in Mountain View — a medical group practice that conducts research and provides care for patients with chronic illnesses — will increase the size of the net.
 

NL93

Senior Member
Messages
155
Location
The Netherlands
"Of the 700 measurable biochemicals or “metabolites” plotted on the chart — including amino acids, carbohydrates, lipids and nucleotides — Dafoe has abnormal levels of 193."
Interesting. I am very curious to know if the same pattern is seen in the other severely ill patients. It probably is.
This disease causes so much suffering, there are thousends of Whitneys out there, suffering unimaginably, we really need some answers quickly. Dr Davis is clearly doing all he can to find answers, i am very grateful for that. Such a hero.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Great, but guys, this article leads to that article: http://med.stanford.edu/news/all-ne...lores-how-relationships-influence-health.html

Ron Davis, PhD, has built a career solving biochemical puzzles — and now his son is desperately ill due to a biochemical puzzle of his own. So Davis, a professor of biochemistry and of genetics at the Stanford University School of Medicine, has taken on a new scientific challenge: sussing out the molecular cause of chronic fatigue syndrome, the disease afflicting his son.

The story of this quest appears in the spring issue of Stanford Medicine magazine as part of a special report, “Relationships: Ties that heal.”

As the article explains, for Davis, “Each day has become a race to unravel the mystery of chronic fatigue syndrome, the disease that is killing his 32-year-old son, a freelance photographer who was forced to move into his childhood home five years ago when he was no longer able to care for himself. It’s a puzzle that Davis ruminates over day after day, his mind humming along in high gear, constantly shifting through data, hypothesizing, analyzing.”

It’s no surprise that a loved one’s dire need inspires zeal for finding solutions. In the medical realm, as in every area of life, relationships play a huge role.

Influencing our health
Not only do relationships help determine what research is conducted, they influence our physical well-being. Connections with others affect the production of hormones, the actions of immune cells and the pattern of our sleep cycles. Researchers are finding that relationships are a crucial, though difficult-to-measure, ingredient for health.

The magazine also includes a Q&A with actress Glenn Close and her sister Jessie about their family’s experience with mental illness and their fight to end stigma against the mentally ill. The online version of the magazine includes audio of the interviews.

Additional highlights of the special report include:


Additional articles include a story about the decline in the diversity of our gut microbes and what we can do about it, and an essay by a Stanford psychiatrist about returning to his home state of West Virginia to help fight the drug problem there.

The magazine is available online. Print copies are being sent to subscribers. Others can request a copy at (650) 723-6911 or by sending an email.

The article that starts this thread is 100% biomedical, but they put it in an issue about 'relationships' and ending the stigma of being mentally ill. It's unfortunate.

...I don't think the theme overall is unfortunate, to be clear; the issue also contains info regarding our intestinal microbes and our relationship to them! It's more like this overview's context is a bit off-putting.
 
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halcyon

Senior Member
Messages
2,482
The article that starts this thread is 100% biomedical, but they put it in an issue about 'relationships' and ending the stigma of being mentally ill. It's unfortunate.
I think we all assume that Stanford must be great because Dr. Montoya works there and they're home to the ME/CFS Initiative, but they definitely have psychologizers and ME deniers on their staff, make no mistake.

 
Messages
2,087
For me the most interesting part of the article was the part about Ron Davis and penicillin. ( I knew most of the other details before, I'm not taking away from the article )

We take antibiotics for granted it's hard to imagine what it must have been like living and being Ill during one of the biggest medical breakthroughs of all time. Perhaps we might get to experience that feeling too someday.
 

Janet Dafoe

Board Member
Messages
867
I'm Whitney's mom. Thanks for all your support. Getting messages from around the world is amazing and really makes a difference. You guys know how isolating this disease is. That goes for caretakers too! We are really excited about all the new findings and the new study. It can't happen fast enough for us!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I'm Whitney's mom. Thanks for all your support. Getting messages from around the world is amazing and really makes a difference. You guys know how isolating this disease is. That goes for caretakers too! We are really excited about all the new findings and the new study. It can't happen fast enough for us!

Sending you positive thoughts and prayers for your son to pull out of this. I had a crash in 2009, I didn't need anyone to take care of me, but was pretty much housebound for a month or 2, was out of work for about 3 months. I can only imagine that it is going to take even longer for your son to pull out of this :(

I wonder if I was in such sad shape if my family would grasp the seriousness of my illness? They probably would be now, because I am living with some of them. When I crashed in 2009, I was living alone. Had the 2 day in a row CPET testing done in 2010, my sister went with me, but she doesn't seem to want to get it now. It's not convenient for her.

GG
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Sending you positive thoughts and prayers for your son to pull out of this. I had a crash in 2009, I didn't need anyone to take care of me, but was pretty much housebound for a month or 2, was out of work for about 3 months. I can only imagine that it is going to take even longer for your son to pull out of this :(

I wonder if I was in such sad shape if my family would grasp the seriousness of my illness? They probably would be now, because I am living with some of them. When I crashed in 2009, I was living alone. Had the 2 day in a row CPET testing done in 2010, my sister went with me, but she doesn't seem to want to get it now. It's not convenient for her.

I came down with this in 2003, caught Mono, I was 33 YO then. I am a male as well, and I find it so sad to hear of these other males who are in such bad condition.

Also want to add, that my Dr says I fit the IOM criteria for ME/CFS and my application was sent into SMCI and I should become part of the Biobank! I am willing to be studied and move this science forward! I have a BS in Science :)

GG
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
The article has been highlighted in Forbes today...

http://www.forbes.com/sites/paulhsieh/2016/05/31/three-tales-of-health-technology-and-freedom/


Useful quote to have in Forbes...
Forbes said:
The National Institutes of Health allocated only $6 million in 2015 for research into CFS, which has roughly 2 million sufferers. (To put this in context, the annual NIH research budget for multiple sclerosis, with 400,000 sufferers, is $94 million.) A historical lack of acceptance within the medical establishment for CFS as a biological illness has resulted in a woeful underfunding of research, Davis says.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Is there a link to donate to the OMF? If not, is anyone able to provide on in the comments section (if there is one)? My ad blocker won't let me proceed to the article.
 

Gingergrrl

Senior Member
Messages
16,171
I think we all assume that Stanford must be great because Dr. Montoya works there and they're home to the ME/CFS Initiative, but they definitely have psychologizers and ME deniers on their staff, make no mistake.

I can second that this is true from personal experience. I have never seen Dr. Montoya or been to the CFS Clinic and have nothing but respect for Dr. Montoya. But I saw another doctor at Stanford, who I will not name, who found multiple serious medical issues wrong with me, offered me treatment options, and then retracted them and re-labeled my entire case as "psychosomatic" and sent letters to my doctors without my permission stating such. Luckily, all of these doctors knew me very well and found the letter to be nonsense b/c it was obvious to them how ill I am and how much my health has decompensated over the last three years. But a new doctor who did not know me believed the letter and was not willing to work with me because of it. Stanford like any institution, has true heroes like Ron Davis and doctors who are solidly in the psychosomatic camp.

@JanetDafoe Some are good. But leading surgeon there told us jtube wouldn't help because W needs "intensive psych intervention".https://twitter.com/oslersweb/status/732388670536355841 …

@Rose49 Sorry I could not get the Twitter post to properly copy from above. I just wanted to say that I am so sorry that the surgeon at Stanford put you and your family through this during such a stressful time as having a jtube installed for your beloved, Whitney. Did he not know that you are a therapist yourself (or just not care?) I wish I could share more details of what the Stanford doctor did to me with those letters but cannot at this time and left feeling that there is no real recourse.

Of course the best revenge is to prove him wrong by getting treatment and getting better. My two main docs are working very hard right now to get a treatment approved for me. The irony is that the Stanford doc actually found some abnormalities that no doc had ever found. We were very grateful and expected him to take full credit for the discoveries but instead, dismissed his own findings as psychosomatic. We cannot make sense of that no matter how hard we try and with time, we will just have to let it go.

I feel a connection to you knowing that you have experienced something similar. I want you to know that I continue to pray for Whitney and your family every day. I met your husband, Ron, in Oct 2014 at the a pre-screening for Forgotten Plague and even tough I only spoke to him briefly, he made a real impression on me and gave me a sense of hope. Our community can never thank him enough for all that he is doing for us.

I believe that the illnesses represented on this board will turn out to be a variety of sub-groups, or maybe even several different illnesses with similar pathology, but we will never learn the truth without Ron, OMF, and the Severely Ill/Big Data Study working to solve this.