Whitney Dafoe

Severe ME/CFS patient and advocate. Photographer, filmmaker, artist, creative. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊ We exist.

My name is Whitney Dafoe and I have severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS). I have had symptoms for 15 years but have slowly gotten worse because of a lack of beneficial treatments. For the last six years I have been completely bedridden and unable to speak at all or communicate in any way. I can’t eat even a tiny crumb of food or drink a drop of water due to a paralyzed stomach (severe gastroparesis). I am fed through a tube that goes directly into my stomach (J—Tube) which feels like being injected with cement everyday. All fluids go through a permanent tube inserted into my chest (PICC line). I can’t do anything while lying in bed either. I’m not sitting here playing video games, texting, or watching movies, etc. I’m unable to do any of those things or anything that used to bring meaning to my life. Even when I’m alone in my room minor movement and activity is difficult for me and any extra stimulation that would bring joy or meaning to a healthy person hurts me. I know my ceiling very well. I can't think clearly due to blood circulation problems to my brain. So I can’t daydream much either. Most of the time I live in a thoughtless, feelingless void that is more horrific than anything I ever could have imagined. I am alone in bed all the time except for brief moments when caregivers come into my room to do basic tasks that keep me alive while I lie completely still (I can’t move a muscle with a person in the room or I get worse). While they are in the room I have to wear earphones playing white noise covered by earmuffs to isolate me from them as much as possible. I have to keep my eyes closed with a towel covering them. And even this contact makes the illness worse. If a caregiver makes a tiny mistake deviating from the everyday routine it can be too much mental stimulation causing me to use more energy in my brain than I’m capable of and the consequences can be devastating to my health making me permanently worse. I also have to keep to a daily routine because otherwise it’s too difficult to avoid doing too much and accidentally exceeding my energy limits which makes me worse. If I ever went way above I could die. I am only able to communicate by taking an anti-seizure drug called Ativan which I’ve discovered temporarily alleviates some of my sensitivity to contact with people and allows me to move with them in the room. But I can only take it about once a month or I will habituate to it and it won’t work anymore. While on Ativan I still can’t talk, write, text or draw. I mime desperately like gestures from hell. It takes hours to communicate these posts and makes me worse but I do it anyways because most people with severe ME/CFS simply disappear into dark rooms never to be seen or heard from again and someone has to tell our story. I lost all my friends when I became housebound due to various degrees of prejudice ranging from constantly questioning the limitations the illness put on me and constantly, subtlety asserting that the illness was in my mind, to directly telling me they thought the illness was in my mind. These were good friends including my best friend- people I thought would be forever in my life. Through rather profound ingenuity while still housebound I later managed to find new friends who simply understood and didn’t make me constantly justify the sacrifices I had to make because of the limitations the illness imposed on me. But when I continued to get worse they left me one by one as they decided they couldn’t handle being close to someone going through something so sad and terrible. So again I was left without any friends. I’m one of the luckiest of ME/CFS patients in that my family has always understood that I was sick and continued to support me. Many people who get severe ME/CFS wind up homeless and die Jane Do’s with no recorded cause of death. I recently got lucky and a fellow ME/CFS patient named Jen Brea who found a cure that works for a small subset of patients was visiting my parents when I took Ativan and I managed to let her into my room and meet her (not easy for me). We have become close friends. It seems to require 3 tiers to have a friend with moderate to severe CFS. Being a compatible person for a friendship, understanding that I’m actually sick, and understanding and having experienced ME/CFS. I still can’t have much contact with her though because of my limitations. Here’s a couple good short essays written by Jen Brea about meeting me. I think she painted a good partial picture of my life now which is more personal than the CNN, Mercury News etc articles written about me (but they are easily google-able). A little background- she made a documentary about ME/CFS called “Unrest" which I’m a major role in and has seen wide acclaim - a good thing to watch if anyone wants to know more about me or ME/CFS. It’s on Netflix, Amazon and various other streaming services. She had moderate ME/CFS at the time and directed most of it via Skype. Quite an impressive feat. Meeting Whitney, by Jennifer Brea
https://medium.com//meeting-whitney-cf179fdad0a9

Whitney's Playlist, by Jennifer Brea
https://medium.com//whitneys-playlist-a8e2bf3eaf81

An ex girlfriend named Stephanie Land, who has written a bestselling book, wrote this about me when she found out what was happening. The Love of a Thousand Muskoxen: Grieving a Love Lost to Time and Sickness, by Stephanie Land
https://longreads.com/2016/10/24/the-love-of-a-thousand-muskoxen-grieving-a-love-lost-to-time-and-sickness/

And an article that is surprisingly accurate and quotes things I wrote in the past about myself and the illness. Chronic Fatigue Syndrome Isn't What You Think - It's Much Worse, by Christine Schoenwald
https://www.yourtango.com/2016287352/chronic-fatigue-syndrome-much-worse-than-you-think

Chronic Fatigue Syndrome (as it’s called in the USA) or Myalgic Encephalomyelitis (as it’s called in Europe) is an extremely devastating illness that takes and takes and takes until there is nothing left but flesh and bone. I’ve lost my friends, my career, my hobbies, everything that brought meaning to my life and all sense of humanity. Right now a viral pandemic has spread throughout the world. Every single person in the world is susceptible and at risk of catching it and possibly dying from it. Everyone reading this should know that every single person in the world should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME/CFS is a viral illness. A huge population of ME/CFS patients got the virus Mono and never fully recovered, instead they wound up with ME/CFS. And because of many of the same political idiocy and dysfunctional medical/societal systems we are witnessing causing the Coronavirus to be much much worse than it had to be, ME/CFS has been completely neglected for 40 years since it was discovered, with hardly any research money devoted to figuring it out and finding a cure. We are already seeing Coronavirus patients get over the infection but not fully recover and who will likely get rubber stamped with "post viral syndrome" or some such diagnosis which does nothing but get them out the door. What these partially recovered Coronavirus patients really have is ME/CFS. Who knows how many will wind up with ME/CFS but it is something to seriously fear because it means they will never recover. It’s not just the suffering these countless new ME/CFS patients will experience indefinitely but the huge drain on worldwide resources. It is a seriously costly illness due to the incapacitated state it causes. For the last 40 years there’s been pretty insignificant research into ME/CFS due to this unthinkable politically charged stigma throughout all levels of society and an inexplicable lack of funding. But in the last 5 or 6 years things have begun to shift thanks to a new group of renowned scientists from around the world, including many Nobel laureates, deciding to take on the illness. Led by one of the greatest scientific minds in the world - Ronald W Davis - and working out of Stanford University. They are entirely privately funded mostly by the Open Medicine Foundation https://www.omf.ngo/ and determined to . Right now they have launched an ambitious study taking blood from Coronavirus patients and then monitoring their progress so they can see, in real time, the transition from Coronavirus to ME/CFS and gather huge amounts of medical data along the way. This could be a turning point to figuring out how ME/CFS gets triggered and how to stop it before it starts. Every single person in the world should be terrified at the prospect of getting ME/CFS. No one who gets the Coronavirus is safe. But you can do something about it to help in case you do. Donate to the Open Medicine Foundation here https://www.omf.ngo/ways-to-donate/

10/04/2025

Feeling depressed because you can't do anythig but lie in bed is so hard. When you can be at least a little active you can write about the sadness, you can do something nice for someone you care about, you can make something like a craft even if it's trivial. You can find a way to work through the sadness or bring you out of it. When you're depressed because of the inability to do anything at all, you're just stuck in a dark hole and it often feels like there is no way to get out.

There is a way out though - time. It is always fleeting. And we have to remember that - I have to remember that right now. There are so many beautiful, heartwarming, loving, life affirming times to come. But in the moment, it can be devastatingly dark.

Love, Whitney 💙

10/03/2025

The *official* ME/CFS Food Pyramid! Your path to better health and a brighter tomorrow, running over green hilltops with the wind in your hair, flying kites with loved ones, everyone laughing, bu****it, bu****it, bu****it 😘😉

(This is a joke and not medical advice)

💙 Whitney

09/22/2025

God grant me the serenity to accept the loss of my entire life,

The strength to not have strength,

And the wisdom to know when to lay down and hold the f**k still.

The ME/CFS Prayer 🦋

-Whitney

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09/13/2025

‼️Trigger warning: talks about su***de‼️

Yesterday I received the heartbreaking news that my fellow Dutch ME sufferer, Dennis, has unexpectedly passed away. I knew Dennis from the support group for people with ME here in the Netherlands, and he often commented on my page as well. He always came across as a kind-hearted, likeable guy with whom you could share a good laugh.

Dennis had been ill for about five years, and ME had pushed him to his absolute limits. In the end, he felt he had no other option but to end his suffering through su***de.

Since Dennis and I were both men of a similar age with ME, and both from the Netherlands, I felt a connection with him. That said, we didn’t have the chance to communicate much on a personal level, though there was always mutual respect between us.

As some of you know, I also lost my boyfriend Toni, my partner for seven years, to su***de, three years after I first became ill. Toni was not someone who spoke much about his feelings. He kept everything bottled up, and although we knew he was suffering mentally and that he might one day take his life, it was still incredibly difficult to truly see what was happening inside him.

In hindsight, you always wonder: could I have done more? Could I have asked different questions, noticed the signs, reached out in another way? I find myself asking the same now about Dennis. Why didn’t we communicate more? Would it have helped him feel less alone in his suffering?

Men, in general, often talk less about their feelings. That can have its advantages, but in times of deep suffering and despair, opening up to others, especially fellow sufferers, can be vital. Some men with ME do share their experiences, but many also hide behind posts about science, rarely talking about the personal impact and daily suffering.

When I speak privately with some of them, I often hear just how incredibly tough their lives are, how desperate they are for help and (emotional) connection, yet very few people know, because they don’t feel comfortable opening up. Even some well-known voices in the community carry this silence.

There is a support group specifically for men with ME, but sadly, there’s very little interaction there. And that, too, says something about us men.

About 80% of the ME community is female. As a former ballet dancer, I grew up in an environment where women were always the majority, which was often wonderful and fun, but as a man, it can also intensify feelings of isolation. Especially when you are severely ill.

Research also reflects this imbalance. Very little attention is given specifically to the experience of men with ME. One rare study described how men with ME often experience shame, threats to traditional masculine roles (work and provider identity), social isolation, and sometimes suicidal thoughts or hopelessness. But studies like this are almost nonexistent, true unicorns in ME research. In that regard there's very little representation for men with ME.

https://drive.google.com/file/d/1syGbptiLrbd9paSlJLceNnKDDK4tC_tA/view?usp=drivesdk

I’ve been reflecting on this for a while now: that men with ME need to open up more about our experiences, but also that the community as a whole needs to take better care of men with ME. We need stronger advocacy, awareness, and representation for men specifically, so that men feel recognized and seen and not forgotten.

Recently, I asked about possible subjects for a new film, and one that has been high on my list for a while now is the suffering of men with ME. Dennis’s passing has once again made it painfully clear to me how urgently such a film is needed. Not only for adults, but also for the many children and young men with ME who reach out to me as well. I'm often worried hearing the despair, pain and sheer panic they're going through. Especially when they've quite recently fell ill.

We need better care for everyone with ME. But we also need specific care, understanding, and representation for men with ME.

To all my fellow sufferers: please, talk to someone about your struggles. If you can’t find someone nearby, share your story in a support group. There are thousands of people who know what you’re going through. You are not alone and your voice is desperately needed!!!

And to the men: there is a group for us too. Join us. Talk with us. Don’t carry it all alone and sharing your story might also make others feel seen.

https://www.facebook.com/groups/893786610807028/?ref=share

For Dennis: I hope you are free now from pain and suffering. May you rest in peace and power, my man. I will miss your presence.

My sincere condolences go out to his loved ones. I wish you strength in this incredibly difficult time.

Dennis will not be forgotten.

💙💙💙

09/10/2025

The Sad Choice To Be Passive

That mental place where you can see all your ideas clearly and feel excited about so many things, but you know that the minute you try to do even one of them you'll get sicker and lose that clarity. And you'd rather float in clarity than try to take action and go back into the fog of nothing-numbness.

So you sit or lay in bed and plan out all your ideas - in your mind you write things, you watch yourself doing work on whatever pleases you, you see yourself out walking or running or hiking or climbing, you see yourself making something, etc. And that vicarious imaginary life feels better than trying to act, not getting very far, and being dulled to the feeling of not existing at all.

How f***ing devastating that sometimes we have to chose to passively imagine our lives because the alternative is so so much worse.

Love, Whitney 💙

09/09/2025

I’ve been sleeping so well lately! Not even waking up once during the "night" ( I can only sleep during the day 🙄) But suddenly the last 2 nights my mind is "roaming" again as soon as I lay down and I can only sleep for little bits when I give up and try to stay awake -again: 🙄. I’m so out of it now, my thoughts are like "whats'a, who’s that, how's that, who, where, why, what did you do, what's happening again?" 😳😆

But I brushed my teeth, took my meds, and hooked up a new saline bag and a new food bag with water + electolytes so I won’t die of dehydration. And sometimes that’s a successful day with ME/CFS. 💙

09/04/2025

HOPE from Ronald W. Davis PhD’s Working Group Meeting

The ME/CFS community may not realize what a big deal the working group meeting is that is happening Tuesday - Friday right now led by Ronald W. Davis PhD. ME/CFS researchers from around the world are meeting and agreeing to absolute confidentiality about everything being said so they can all share their most current research.

This is very rare in the whole world of scientific research. This meeting is about researchers putting the goal of understanding the very basis of this disease and finding treatments and a cure as fast as possible as their number one priority. Usually, scientists keep their data a secret until it’s published to maximize their chances of getting credit for their ideas and getting publications. Also, most scientists pick an easier goal than trying to solve a complex disease that most people are ignoring. Even if they research ME/CFS, a lot of researchers publish papers on isolated parts of the system that lead to nothing but a published paper. Almost all of Long Covid researh is like this and likewise has led to nothing. We are so lucky to have these brilliant dedicated scientists working for us.

In these meetings they all learn so much. They all share their most current research and then talk about how it all fits in with each other's research and work on a unified theory that incorporates all the data and explains all the symptoms. It not only really speeds ahead the research exponentially, but gives the researchers huge insights into how their own work fits into other work being done and new ideas on how to move forward. Many collaborations are formed that would never happen without this meeting. Over 100 scientists, doctors and patients are included. There is nothing else like it in the world.

And this beautiful, selfless, one of a kind meeting is happening to research ME/CFS. This is one case where we can celebrate ME/CFS getting something that no other illness gets.

It’s both incredibly selfless and brilliant. I want to give a huge bow of gratitude for all the researchers attending and putting us ahead of themselves.

And offer you a glimmer of hope in seeing that something is indeed happening (something very special in this case) and progress is indeed being made, even if we can’t see it all ourselves or benefit from it quite yet.

The final day of the meeting will be a public community symposium. Ron Davis chose a select group of speakers from the science days to speak to the community. Rob Phair will lead a discussion with all the speakers and it will be recorded and made available for people to view later when it works for them.

Follow and Ronald W. Davis and on X for updates on the meeting and a link to view the public discussion!

Love, Whitney 💙

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Useful Links:

❓What is ME/CFS? https://www.whitneydafoe.com/mecfs/whatismecfs
👤 My Story: https://www.whitneydafoe.com/mecfs/mystory
📄 ME/CFS Resources: https://www.whitneydafoe.com/mecfs/resources/
✏️ My ME/CFS Blog: https://www.whitneydafoe.com/mecfs
✉️ Subscribe to my Blog: https://www.whitneydafoe.com/subscribe/
💙 Donate to ME/CFS Research: https://www.whitneydafoe.com/donate
🖼️ My Photography Print Store: https://www.whitneydafoe.com/store

I'm excited to announce our lineup of speakers for our upcoming Community Symposium on September 5! Due to the number of speakers who agreed to participate we have extended the symposium until 2:30pm PST. It will be recorded for those who cannot attend.

Register Here: https://stanford.zoom.us/webinar/register/WN_ytJs3XWjQ0q62N9fmXoajA

09/01/2025

Today on Labor Day, we recognize that working people are the backbone of every society and consider the rights they deserve. But for us, having ME/CFS, today we also demand the basic right to contribute to humankind in some meaningful way. We don’t just have rights in the way we labor, but also to be able to labor at all, regardless of disability or chronic illness.

==========

❓What is ME/CFS?
https://www.whitneydafoe.com/mecfs/whatismecfs
👤 My Story:
https://www.whitneydafoe.com/mecfs/mystory
✏️ My ME/CFS Blog:
https://www.whitneydafoe.com/mecfs
📄 ME/CFS Resources:
https://www.whitneydafoe.com/mecfs/resources/
💙 Donate to ME/CFS Research:
https://www.whitneydafoe.com/donate
🖼️ My Photography Print Store:
https://www.whitneydafoe.com/store

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08/27/2025

Remembering What Real Life Is Like

My Jtube broke finally and I have to go to the hospital tomorrow and I’m feeling stressed. (Jtubes always break, it’s just a matter of time and I’m writing this last night). For 13 years my life has been a planned, predictable routine. Everyday. And this is such a huge departure from that. I'll take Ativan and get Fentanyl during the procedure and both will help protect me from my illness worsening. And I am very lucky to get to go to a wonderful hospital that is full of caring, understanding people who actually all remember me from previous visits. I will still have a minor crash but probably be ok after a week or two recovering. But that’s not what makes me stressed.

♿️ 𝐀𝐜𝐜𝐞𝐬𝐬𝐢𝐛𝐥𝐢𝐭𝐲: 𝐋𝐢𝐬𝐭𝐞𝐧 𝐭𝐨 𝐭𝐡𝐢𝐬 𝐩𝐢𝐞𝐜𝐞 𝐫𝐞𝐚𝐝 𝐚𝐥𝐨𝐮𝐝:
https://www.whitneydafoe.com/mecfs/audio/25-08-27-Remembering_What_Real_Life_Is_Like_me-cfs.mp3

It's such a deviation from my routine, and that is so stressful. You learn very quickly when you have ME/CFS that unknown situations are like minefields and you avoid them like the plague. Because unknown situations equal unknown energy use. And we of course need to stay below a certain amount of energy use. But these unknowns are so normal. It’s so sad to be so estranged from such normal definitions of being alive. I mean I haven't been outside, seen the sky, or breathed fresh air, or felt the sun on me, or watched - without window glass between me - the beautiful way leaves move gently in a breeze. Or anything real-regular-life like that in a year since my last trip to the hospital.

And I’ll not only be outside, but I’ll also see healthy people wasting energy, bubbling and bouncing around in a way that looks to me like a hoard of rabid ants, chattering away, literally just throwing energy away like it is worthless. Because to them, it is worthless - it has no value because they have rather limitless energy and even in the weakest, sickest moments of their entire lives, they have never experienced the energy limitations ME/CFS imposes on a person.

And I will be exposed to that healthy world where everyone feels fine and has plans for the future and goals and a full life. Where they live a full day and go to sleep knowing tomorrow will be another full day of work and play and love and fresh air and sun and endless surprise unknowns of all sorts.

I will watch people talking endlessly, acting on every impulse without a thought. Meanwhile, I think about every single action before doing it. Mine is a completely pre meditated life. Out there, it's just impulse-bam-action. No questioning, pondering, wondering: will it hurt me, is it worth the harm, should I use my energy on this or save it for that, etc.

The nurses all around the hospital constantly say things like "ah ha ha ha ha yeah did you see that show last night?"

And my life is like "can I watch the show, will it make me worse, can I even follow it mentally right now? Then, if I do watch the show, can I talk to someone about it? And if I do, should I just chat with a friend about it online? Can I handle someone in my room for 5 minutes and if I do should I use that time to talk about a TV show? And if I do, can I laugh with them or will that use too much energy? Should I hold back and save that laughing energy for later? I could go on, but you know the drill. I have a thousand thoughts about every little movement and action that healthy people just do without even realizing it, much less thinking about it.

I honestly don't know if I would prefer seeing the real world once a year or just letting that world fade into the back of my mind - not forgetting it, but not having it shoved in my face like tomorrow. And making the best out of what my life is like and what exists within the walls of my world.

It is so hard seeing the real world and really feeling it and then coming back to my room and closing all the doors. I literally watch the top frame of my door move over me as I get wheeled back into my room and the sky disappears over the roof.

The spontaneity that healthy people show so clearly is at once a refreshing reminder of what life is supposed to be like, but also a shocking and profoundly sad reminder of what my life is like.

My heart goes out to all of you trapped inside walls of routine, pre meditated life, lack of spontaneity, necessary control over everything around you, endless thought and questioning before every action and then often regret (or sadly, self blame) afterwards when we make the wrong decision and it hurts us and makes us sicker. This is not how any sentient being is supposed to live.

Love,
Whitney 💙

PS. By the time you read this, I’ll be at the hospital, from 12pm to likely 6pm Pacific USA time. Wish me luck staring down the healthy weirdos!

==========

✏️ My ME/CFS Blog:
https://www.whitneydafoe.com/mecfs
✉️ Subscribe to my Blog:
https://www.whitneydafoe.com/subscribe/
❓What is ME/CFS?
https://www.whitneydafoe.com/mecfs/whatismecfs
👤 My Story:
https://www.whitneydafoe.com/mecfs/mystory
📄 ME/CFS Resources:
https://www.whitneydafoe.com/mecfs/resources/
💙 Donate to ME/CFS Research:
https://www.whitneydafoe.com/donate
🖼️ My Print Store:
https://www.whitneydafoe.com/store

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08/21/2025

I don’t want to go to sleep, I haven't done anything today!

I sometimes wonder how much of ME/CFS patient sleep issues are from doing so little. So little activity, so little life and love and emotion and experience.

Of course, there are biological factors at play too making it hard to get to sleep, stay asleep and get quality sleep even when we can sleep. I just imagine it being so much easier to get to sleep if today had been filled with activity and I knew tomorrow would be too.

Part of going to sleep is letting go of the day, whether it be a good day or a bad one, and looking forward to tomorrow and it's so hard to do that when we have lived so little today and know tomorrow will be the same.

08/18/2025

These days slowing down,
A whole life in a glance.
The clearest light shines in the darkness,
Shining on me.
And we're still doing this dance,
One step at a time.
As the days slip by,
As smooth as glass,
The moments pass.
And all these precious things you gave,
That I've been holding in my hands,
These grains of sand.
A man stands in a river,
Pushes against the stream.
Time is a tide that disobeys,
It disobeys me.
It never ends.
-David Gilmour

For those who can listen: https://song.link/zhfrk###jtspd

08/14/2025

The Stanford Genome Technology Center will be hosting a virtual "Patient Day" on Friday, September 5th from 8:00am-1:00pm (PT)! Patients will have the opportunity to hear from speakers who will present their findings on ME/CFS, what they believe is the cause of the disease, and how they are working....

Address

Stanford, CA

Website

https://lnk.bio/whitneydafoe

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