It’s Whitney Dafoe’s 37th birthday.
He’s had chronic fatigue syndrome (ME/CFS) since 2004 and has been severely ill since about 2012. Fed by feeding tubes, eyes and ears covered, too weak to move, unable to speak or tolerate almost any stimuli. Whitney has hovered in a kind of netherworld for seven years. Except for brief arousals from Ativan, Whitney remained too ill to communicate other than through pantomining for years.
It doesn’t sound like there’s much to celebrate, but there is. For one, without speaking a word, Whitney Dafoe has made a profound difference in this field. Whitney’s illness brought his father, Ron Davis, one of the most highly acclaimed geneticists and inventors of his era, into this field. Ron Davis then brought Mark Davis, Robert Phair, Ron Tompkins and many others into the ME/CFS orbit. New technologies and hypotheses have appeared.
With the Open Medicine Foundation’s support, ME/CFS now has footholds – small ME/CFS Research Centers – at two of the top universities in the world (Stanford/Harvard) – and two more research centers in Canada and Sweden.
There’s no telling what impact his story – so vividly portrayed in media publications – has had. Francis Collins, the head of the NIH, has said how Whitney’s story has touched him. It goes on – a book charting Whitney and his family’s story, and ME/CFS, will come out early next year.
The nanoneedle, the Metabolic Hypothesis, the Severe ME/CFS study, the Stanford Working Group, the Symposiums, the research centers … none of it happens without Whitney. Without saying a word – just by being there – Whitney has made a huge difference.
Recently, though, a remarkable thing – one of the most remarkable things I can remember -has happened – Whitney has awakened using a drug called Abilify.
Janet Dafoe, his mother, and Ron glommed onto Abilify after Hector Bonilla MD at Stanford learned that after one his ME/CFS patients took Abilify for something else, it improved her ME/CFS symptoms as well. Janet reported that Bonilla has found low doses of Abilify helpful in a number of patients. A placebo-controlled trial using low-dose Abilify is being planned at Stanford.
(Abilify increases dopamine, decreases serotonin, and is an anti-inflammatory. It’s categorized as an anti-psychotic, but so many drugs end up being used for purposes so different from their original purpose that categorizing a drug can seem like an exercise in futility. Abilify, for instance, improved cognitive functioning in people with ADHD who were not depressed. Given how little we know about how drugs operate in the body there’s no telling what it’s actually doing with Whitney and other ME/CFS patients.)
They started about the smallest dose possible (.25 mg), worked their way up to 2 mg, and then waited several weeks. They were about to call the experiment a failure when Whitney pantomimed using objects in his room (they have created their own language using small objects) to stick with the drug. Then, a couple of days later, they got a big surprise – a text from Whitney with a small video in it.
Whitney had been unable to touch or even have an iPhone in his sight – without crashing – for years. Now, to their astonishment, he was using an iPhone to send them a text – plus he had made a video to boot. Something had clearly happened. Abilify had kicked in.
In a Facebook post, Whitney said it was like a small part of his brain waking up, leaving the rest of him as he was. Over time, he was able to add a keyboard to his computer and use that.
Most of the time he’s as sick as ever. He can’t talk, has lots of problems with stimuli, is still being fed by a J-tube, has lots of stomach pain and his care is the same. Being fed via the J-tube, he said, feels like “being injected with cement”. Visitors have to be very careful to be quiet in his room so as not to cause him to crash. His windows are blacked out. Wryly, he says he knows his ceiling very well. ME/CFS has been an incredible endurance test.
When he has the energy, though, he’s able to communicate. He has re-emerged. It’s how he’s emerged that is so striking.
His cognitive faculties appear to be completely intact. While his body remains very, very weak – his brain is clearly working very well. In fact, it doesn’t appear to have skipped a beat over the past five years. Articulate, discerning, poetic and sometimes provocative posts have flowed from his Facebook page over the past 6 months or so.
His mother, Janet, said that she wasn’t surprised by how thoughtful Whitney’s posts are. Even as a three year old, she said he was unusually thoughtful and empathetic. He’s always been focused on the big picture and always went his own way as well.
Still, it’s amazing that Whitney’s mind appears to be untouched after 7 years of almost complete isolation and debility, in which he’s been unable to speak or communicate, except for brief periods by pantomime. Even though he couldn’t communicate, he said he’s always been able to think clearly if he wasn’t in a “mental crash”.
Those mental crashes, though, were devastating. He described his mind being “wiped clean”, leaving him in a “thoughtless, feelingless void” which was worse than anything he could have imagined before. He was unable to access feelings or thoughts, but was still totally conscious. At other times, he felt he was able to think very clearly.
His re-emergence suggests that the research thus far is correct: the ME/CFS brain isn’t physically damaged – it “simply” needs to be reset or revived in some way. The cognition can come back. That’s good news given that most people with ME/CFS suffer from cognitive problems. Whitney’s ability to come back and communicate so effectively – via the computer at least – should provide hope.
Whitney’s essays on his Facebook site have touched upon a wide variety of themes. Below are snippets from some of them.
After a scary episode brought on by an infection that left him with night sweats, tremors, muscle convulsions and gasping for breath, he exhorted people with ME/CFS to:
“don’t forget the light. It’s there even when you can’t see it. I promise.”
“I want to be clear about something…..I’m never giving up.” (Sept 2nd)
“I hope you all know that your suffering, and you staying alive is making a difference. Every single person who has ME/CFS and stays alive is engaging in an act of protest against the fucked up “shitstym” (as Peter Tosh would call it) that has kept us sick for decades. I’m proud to be amongst so many heroes.” (Aug 13th)
“I call for an end to the age of suicide from Chronic Fatigue Syndrome / Myalgic Encephalomyelitis…. You staying alive in the face of this is literally changing the world.” (Aug 8th)
“I think one important aspect of coping with ME/CFS is lowering our expectations, as sad as that is to do. But a discrepancy between expectations and reality is one of the biggest causes of unhappiness, even among healthy people. Everyone wants a Porsche and a big house and gorgeous significant other, etc and very rarely does it all come together. (And even when it does healthy people are still unhappy because those things can’t make them happy, happiness is a state of mind).” (Sept 7)
From a poem sent to him by a Buddhist master he studied with:
“When you stop thinking —
The twists and turns of thought stop,
You break free.” (July 2nd)
On August 7th, Whitney composed one of the most powerful statements I can remember. There’s no embellishment. No attempt to pull at the heartstrings. Just the facts… it just knocked me over…
“I haven’t left my room for 7 years except when I have to go to the hospital to change my J-tube feeding tube out of medical necessity. I am only able to do this without dying by being sedated with Ativan the entire time as well as Fentanyl during the procedure.
I haven’t been touched by another human being without it hurting me in 7 years.
I haven’t been able to speak for 7 years. I haven’t had a conversation with another human being in 8 years.
I haven’t eaten a crumb of food or felt a drop of water in my mouth in 6 years. I’m alive because of nutrients being pumped into my body with machines and tubes.
I haven’t taken a shower in 7 years. I clean the most needed parts of myself with baby wipes every day and it absolutely exhausts me. I can’t handle having someone else clean me.” (Aug 7th)
Check out 9 more stanzas on his Facebook site.
“Please Stop Calling ME/CFS An “Invisible Illness”…”invisible” is way too close to saying “non-existent”. When you call ME/CFS “invisible” people will think something very close to “non-existent”. (Sept 29th)
“Awareness Starts with Us – “Remember – every person you don’t tell that you have ME/CFS is a person who doesn’t realize they personally know someone with the illness or worse doesn’t even know the illness exists. A huge part of the reason there’s so little awareness and funding is because patients so often hide their illness from the people in their lives. They do so because of the prejudice they experience but in the long term, it only perpetuates it. It’s time to stop the cycle. If you’re in a position where it’s physically possible, even if it’s uncomfortable, tell the people in your life.” (July 16th)
“The crickets were having a full on love fest outside. Laying there listening (not too intently or it would overwhelm me; I was listening passively) I suddenly was flooded with memories of how I’d felt in the past hearing that same sound.”
“The light is gorgeous outside here in Palo Alto, CA as it filters through the thick haze of smoke overhead from all the wildfires. Everything is glowing yellow and soft. It’s quite magical.” (Sept 9th)
A big opportunity to spread the word on ME/CFS has presented itself. Preorders of “The Puzzle-Solver: A Scientist’s Desperate Quest to Cure the Illness That Stole His Son“, by Tracie White (and Ron Davis), are now available. White wrote the award winning Stanford Medicine piece which introduced Whitney’s story to the broader world. Now she provides a fuller story of the hunt for the end of ME/CFS.
Once he learned Tracie was writing this book, Whitney reported that communicating with her became a top priority for him. Sensing the difference this book has the power to make, he said he spent hours communicating what his life was like, and what ME/CFS was like, in an effort to make sure it was accurately portrayed.
If you’re going to get this book, please preorder it now as the publishers look to preorders to determine how much they will promote a book. I just preordered mine.
Whitney told me that he’s bypassed birthdays for years because of the painful reminders of how much he’s missed. This time he’s celebrating it – and looking forward to getting better. He has great confidence in his Dad’s ability to move mountains with this illness and said that no matter what’s been lost and cannot be regained, he’s “a creative spirit and will find happiness no matter the things I can’t do. I’ll be focused on all the things I am now ABLE to do with my life! Like go out into the world and photograph again…”
The day before his birthday, Whitney posted:
“It’s my 37th birthday tomorrow and for my birthday I would like donations to OMF to help my father’s research. He’s making HUGE headway right now, with some recent game changing discoveries that can’t be talked about publicly yet but trust me when I say things are MOVING. Please donate whatever you can to OMF to keep Superman’s work moving in honor of my birthday. You can donate here on Spot Fund and 100% of your donation goes to OMF.”
“I want to get better and see all of you rise from your beds, wheelchairs, and homes with me!”