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

Discussion in 'ME/CFS and FM News' started by Cort, Jul 10, 2015.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    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

    Last edited: Jul 10, 2015
    Merry likes this.
  2. Issie

    Issie Well-Known Member

    Just heart breaking. Just reading your review has me in tears.

    I hope there can be relief for him and others who have this so severely. What can one say ......... I hope he can find peace and comfort!!!!

    Patty May likes this.
  3. Carole

    Carole Active Member

    I like Issie- wish him some freedom from pain. Much comfort and peace . Such a wonderful future interrupted.

    I too am in tears for this BRAVE SOUL.

  4. Issie

    Issie Well-Known Member

    Cort, is there a way to get a message to this family? So many people I've been in contact with POTS deteriorate to this level. When I was so bad, I was in a wheelchair, so weak I couldn't get myself up out of a chair. And if I tried to talk - would give out of breath. It taxed not just my body but made me mentally exhausted. Have they had him tested for POTS or OI? There have been some that have progressed into MSF. (Multiple System Failure). That was my wrong DX along with Parkinson's (also wrong - POTS makes some have tremors). I just think they are missing something with him.

    Sharon Chaput and Carole like this.
  5. CWS

    CWS New Member

    I wish heart peace for all who suffer from this disease. It is heartbreaking but i am hopeful that one day some beautiful compassionate individual will find us all a cure so that we can live our lives to the fullest. XO
    Melanie likes this.
  6. Carole

    Carole Active Member

    Issie- I agree with you-but have to think this family has thought of this or at least the Doctors.
    Very good point to make. I am also thinking since he did traveled to other countries-that it may be something they have not tested for as it is an unknown?

    I have found lately the Infectious Disease Doctors test for many more things than the CFIDS do.
    Interesting. Don't know who has tested him.

  7. sharonklb

    sharonklb Active Member

    My heart goes out out to him...such a waste of talent and young energy!
    I had a few weeks recently when I thought I may be on an upward point and then had a cognitive episode in the middle of the early hours this morning, got in the shower and before I has even turned it on,I don't know what happened but I fell, heard a crack and went to accident and emergency and have broken my shoulder. Its a horrible condition, which needs addressing.
    Grace2U likes this.
  8. Issie

    Issie Well-Known Member

    Oh NOooo! This happens with POTS and OI a lot. May be something to look into. There are those who faint regularly with upright posture. So sorry you broke your shoulder.

  9. Issie

    Issie Well-Known Member

    There are not that many doctors who even know about POTS. Some that do, don't do the testing long enough to pickup delayed response. My cardio tilt was 45 minutes. My neuro tilt about 15. The 45 min was much more telling. But the 15 min showed it very clearly for me too.

    Carole likes this.
  10. Merry

    Merry Well-Known Member

    This video which is about Whitney and his family and, to a lesser extent, two other ME/CFS patients, may have been made to accompany the news story, although I didn't find it at the Palo Alto Weekly website but on Facebook:

    sue la-la likes this.
  11. Carole

    Carole Active Member

    Just a thought- Why are they continuing with the same Physician -if he is not getting better? Even is he is weak
    seeing someone else and getting another opinion would be worth it.

  12. Searching

    Searching New Member

    Valentijn and Merry like this.
  13. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    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.
    Carole likes this.
  14. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

  15. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

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

    Martinigal Active Member

    My heart just broke when I read this story. I've suffered terribly, but nothing like this poor young man. I must say that his little square he wrote to
    his mom saying "please don't stop taking care of me", really make me anxious. I feel that way a lot. I only receive help from my Mom and I often
    wonder what I'd do without her.
    I'm not sure how this could happen, especially in Palo Alto, about 20 miles down the road from me. With all the great docs at PAMF and Stanford, not a single
    one could find some relief for him. Some relief for one part of his suffering??
    I don't know what else to say. His suffering and the inability for any single specialist to alieve any portion of his suffering leaves me feeling so, so sorry for him
    and a bit frightened for myself too.
    Patty May likes this.
  17. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    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"?"
    Hello!, Patty May and Martinigal like this.
  18. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    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...
    Patty May, Diana Maus and Carole like this.
  19. Merry

    Merry Well-Known Member

    Unless he comes in to fill out paperwork? This is so sad and infuriating.
  20. Carole

    Carole Active Member

    I think I mentioned this in one of my earlier replies my on this. Many viruses we do not even know about exist in other countries.

    What I do not understand is the parents not taking him to Stanford regardless of the procedural issues.
    They have to make the decision. Not going could be critical-which it looks like he is. You do everything, even if he is uncomfortable doing it. He sure isn't getting better at home.

    Also if he is living in a Mold environment-this could be critical for him.

    How Sad for anyone to stay with the Status-QUO if there is an answer.


    Take him to Stanford!!!!!