Living on Empty: Newspaper Story Highlights Whitney Dafoe's Severe ME/CFS

Living on Empty

The recent stunning newspaper article "Living on Empty: Chronic Fatigue Syndrome Saps its Victims But New Research But New Research May Find the Cause" covers patient stories, ME/CFS's history, funding, research, Ron's Davis's work and more.

It comes from a neighborhood newspaper whose neighborhood just happens to be Palo Alto with its rich, highly educated and powerful audience. It focuses on Whitney Dafoe - Janet Dafoe's and Ron Davis's son and his severe, severe case of ME/CFS. The opening visual of family and friends helping to move Whitney is startling, and the before and after pictures of Whitney are just heartbreaking. (This blog takes from that piece and from Whitney's evocative writings on his website.)

Prior to his illness Whitney, a photojournalist, lived an extremely active life. He was curious and creative and committed to making a difference. He'd been to every state in the Union. He'd done volunteer work in Jamaica and India and in President Obama's campaign. He'd lived with a shaman in the Ecuador rain forest. He had won several awards and exhibited his work in numerous exhibitions. He had won a scholarship to travel the world doing photography.

Whitney started noticing some health problems during his travels, though, when he was twenty-one. Like so many others he kept pushing himself. Ultimately his declining health forced him to stop travelling. He started a more sedentary occupation as a wedding photographer but that soon proved to be too much. Four years later, like so many others, he bemoaned his mistake in not pulling back more quickly - and acknowledged how very difficult that is to do, particularly for a young person.

"I spent the first years of this illness pushing myself. I thought it would eventual go away, and I tried to just keep going and do as much as I could. I didn't want to surrender to it, or let it shape my life. If I had known more about CFS and the consequences of over exertion, I may not be nearly as sick as I am today. Though who knows, I probably would have been optimistic and tired to do everything I did anyways."

He described a kind of "fatigue" that few people could envision.

"The most fundamental symptom is debilitating fatigue. But fatigue is much too mild a word. I like to compare the state I'm in now to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day- hung over, not having slept or eaten in 3 days- is close, but still better than many CFS patients feel every day. "Total body shut down" would be a better phrase because you are at a point where your body physically does not have the energy to keep going."

Whitney was in pretty bad shape when he wrote that. Unfortunately it was nothing compared to what was to come. Here's how he was at the time: "I am currently fighting a serious neuro immune illness called Chronic Fatigue Syndrome. It has taken a slow and steady toll on my life for the past 4 years and I am now unable to leave the house much, forced to spend most of my time in bed. I struggle to continue my creative endeavors, and remain hopeful and inspired despite the fairly desolate physical circumstances."

In a chilling paragraph on his website he inadvertently spoke of what the future would hold - for himself: "But some people are much worse than I am. Many people wind up hospitalized unable to move or even speak, sometimes with constant and excruciating pain."

Completely debilitated Whitney now requires full-time care. The Palo Alto article reports that Whitney's "disease has progressed to the point that he cannot talk, read or use the Internet. His joint pain became so severe some time ago that he could no longer walk and needed to use a wheel chair. Now he rarely gets out of bed. On a good day, he’ll show his gratitude by pointing to his heart". An intravenous line is supplying him with food, supplements and medications.

People who don't know about ME/CFS should take note. If it can happen to this young man with the opportunities he had it can happen to anyone. It can defeat your passion and every aspect of your life. Resources can mean nothing. It cannot be overcome by good thoughts. When he still had some health Whitney noted that

"No amount of willpower, happiness or excitement changes this. I can be out of my mind with bliss and still run out of energy to work on something."

Whitney's Prize-Winning Photo ​

In the Palo Alto piece Kogelnik said Whitney's story from healthy, active individual to disabled ME/CFS patient was not uncommon.

"He had in some ways a very typical story. He was a young guy, successful, in-the-prime-ofhis-life kind of person, and very positive but had all of a sudden been hit after a brief acute illness, and he hadn’t really recovered from it. And he continued to kind of not recover from it for months and months; and months became years..”

Whitney described the effects of a crash. Here is one of them:

“My whole train of thought and emotional state got wiped ‘clean,’ no matter what I was thinking and feeling before the crash. Afterwards I couldn’t feel anything or think at all. It left me (in) this ‘empty’ haze that was awful — unable to think or feel anything. Totally numb mentally. Lasted hours sometimes, slowly faded as thought and feeling slowly return. Really awful"

The costs - financial, time, emotional - costs of caring for someone who is so severely ill are also vividly portrayed in the article. Among other things because Whitney's sleep pattern is reversed both parents are often up most of the night. Janet Dafoe, his mother said

"“It’s hard to explain. Most people have experienced loss in the sense of a death and grieving, and you are able to grieve and move on, even if you still feel loss. (But with chronic fatigue) it’s not a normal grief. It just continues, and it’s been going on for years....I go in there day after day and watch my son waste away,” she said. “It’s the worst kind of suffering for a mother to watch her kid suffering and being so miserable".

Invisible Illness - Stories of Chronic Fatigue Syndrome From Palo Alto Online



The article also covers another persons story, the state of ME/CFS research, some encouraging findings and Ron Davis's creation of the End ME/CFS project. It's one of the more complete articles I've ever seen on ME/CFS.

The End ME/CFS Project

The End ME/CFS project aims to gather more data and dig more deeply into the severely ill than in any population that has been seen in ME/CFS. In fact, it's not even close: this would be a full-scale sweep of these patients biology. This comprehensive project is just the kind of ambitious undertaking ME/CFS needs.

They'll search the full genome with special attention given to mitochondrial genes and immune genes. They'll look at proteins found in immune cells, blood and spinal fluid and they'll search for infectious agents in blood, bone marrow, spinal fluid and saliva and changes to gastrointestinal tract flora. They'll also evidence of autoimmune responses. The goal is a biomarker or set of biomarkers they can use to unravel what's going on in this complex illness.

Ron Davis will be holding a fundraiser for the End ME/CFS projects first study on the severely ill at their house in Palo Alto on July 16th. Find out more about and support the Severely Ill Big Data Study here.

The Severely Ill Big Data Study​

 

They are aware of this blog. Janet emailed me the story today. I imagine that he has been tested for OI but somebody is obviously missing something. Whether that something can be found at this point is, of course, another question. Hopefully there is something technology can find but it may be that Whitney's best hope is Ron Davis's Severely Ill study - which he is in. I hope people will be generous with their support.

 

Isn't that something...Thanks!

 

I think Whitney has actually seen quite a few doctors - I just don't think they got in the story.

 

Janet's having trouble getting on the Forums but she emailed to say
"that the Stanford and PMF docs refuse to make home visits, and won't help him unless he comes in to fill out paperwork to establish an official medical record. He can't do that. It would harm him. It's outrageous and really really upsetting. I wonder what happened to "first,do no harm"?"

 

Nancy is also having trouble getting on the Forums. She wanted to add this comment:

I wouldn't be surprised at all if she's right...