Whitney Dafoe
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ME/CFS Collaborative Research Center at Stanford

Part of the
Stanford Genome Technology Center
The ME/CFS Collaborative Research Center at Stanford (MECFS CRC) is where the best research into ME/CFS is happening anywhere in the world. Your donation will have the biggest impact on patient's quality of life and go the furthest towards finding a diagnostic, treatments and a cure.
Click here on the ME/CFS collaborative Research Center Website:
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The Open Medicine Foundation (OMF) advocates for ME/CFS awareness and research funding that they allocate to ME/CFS research centers around the world. Ronald W, Davis, the Director the the ME/CFS Collaborative Research Center is the director of the scientific advisory board for OMF. They are a wonderful organization. But if you donate to OMF, only a portion or possibly none of your donated funds will go to the ME/CFS Collaborative Research Center at Stanford, where the best research is happening. However, you can donate to OMF and specify in your donation notes that all the funds go to the ME/CFS Collaborative Research Center at Stanford. They will honor that.

Support My Advocacy Work  

If you enjoy or benefit from my writings, photography and advocacy work please consider becoming a patron or making a contribution to support me continuing this work. It is expensive to produce and requires a great sacrifice on my part. But please do not feel obligated or hurt your ability to sustain yourself financially. My work will always be available to everyone for free.

You can also support me using these services:

Learn more about supporting my work


A lot of you ask or wonder in the comments how I write these pieces or make these photographs in this blog when I’m so severely ill with ME/CFS. The answer is actually pretty simple - sacrifice.

For example, during a recent week I woke up with energy and immediately used it to start working on a post to share on my social media pages. But after writing the post, making photographs for it and getting it scheduled on Facebook and Instagram and Twitter and published on my blog (which all adds up to a lot of work), I was exhausted and wound up laying down still, sleeping uncontrollably for the rest of the day. And these are long 36 to 48 hour days for me. For complicated reasons, my schedule does not go with the sun, but rather with how long it takes to pump enough calories worth of liquid food into my jtube to sustain me, and when I can’t sleep or my stomach gets sensitive and delays my schedule, which happens most days, I wind up with 36 hour or 48 hour days. So in the end, the only thing I was able to do for 3 days was make a social media post during the only time that I had any mental clarity. The rest of the time I couldn’t answer emails, or spend time with my Niece when she was here, or text with my sister, or stay connected with people I care about online, or watch any movies or series, etc. I laid in bed still and mostly slept. This pattern is quite common for me.

So it’s not that I have more energy than other people, it’s that I prioritize writing and photographing and sharing that with all of you above all else. When I have energy, creating advocacy content is the first thing I do and often the last.

I had the idea recently to offer people the option to support this work and the energy I put into it. I don't have much going on outside of this work like a job, or a relationship, or many friends, or much energy to connect with my family. This is what I do with my free time and energy.

After I got a bit better from Abilify, I had the energy to work on more than I can now and more than this ME/CFS advocacy work and I started making my own headphones which is a hobby I started when I became housebound, as it’s something creative I can do sitting down inside that uses little energy. I completed multiple headphone models and started a website hoping to start a company selling them. You can read more about my headphones here:

 rhythmdevils audio

But I am now too sick to make production units to sell, so decided to hire a friend to make them for me, but I now have too little energy to train him and I’m worried about crashing from the training sessions even if I take Ativan to protect me. So it has been delayed for a long time. But i’m telling you because I may have a headphone company up and running at some point. Still, any funds generated from that company would just go towards paying back the significant R&D costs of developing them. And I’m too sick to keep creating new models and possibly too sick to make the company happen at all which breaks my heart as I’ve put so much love into the project and they are truly special, one of a kind headphones. So I may eventually have another job, but right now this work is my job and my purpose and it will always come before anything else.

My ME/CFS advocacy work also costs a lot of money in all the equipment I need to maintain like my computer, backup hard drives, the latest iPhone for the best image quality, a DSLR, a huge amount of camera gear to allow me to make images from bed, etc.

So since this ME/CFS advocacy work is a job for me (one I love) and is expensive, I’m going to let people make contributions to my work if they choose to on a Patreon page I’ve created, or directly with one time or recurring donations in multiple payment formats.

I want to be clear about this with you all though, that it is an option. I know that many or most of you are having a hard time financially, as this illness usually takes away our means of income while at the same time costing a lot of money because insurance doesn’t consider it legitimate. I could not even get a wheelchair from my insurance company covered when i could no longer walk to the kitchen to get food to keep myself fed, and a wheelchair would have allowed me to get to the kitchen freely. I had to buy a used wheelchair myself on Craigslist. This is just one example of course, there are many examples like this from all of us, most of which are cruel, inhumane and devastating. So I understand that it is difficult or impossible to maintain an income and a very expensive life to lead.

So I want to be clear that nothing I create will ever cost you money. I will never charge for anything of substance that I create unless it is published somewhere that does charge money for accessing it. My goal is to help ME/CFS patients, not to make money.

I also understand that donating to ME/CFS research is the most important thing, and I have links to donate to ME/CFS research displayed prominently everywhere i can, always above any link to support me.

But I believe that we need more than just research donations and that my work is important for awareness (which generates research donations) and directly important for patients, caregivers, friends, loved ones and our world wide community as a whole to survive and sustain itself.

So I want to allow people who can give back to me an opportunity to do so in whatever amount makes sense to them financially. I might make some exclusive content on my Patreon site, but it will never be anything that I think would benefit fellow patients or the community, it would only be fun bits and pieces. And if you donate a certain amount that makes it financially possible, I hope to offer an annual print of an image of mine, possibly with a quote or bit of inspiration.

I’m telling you this because I know how the internet works, rumors spread quickly and often seem more valid than the truth. I want you to know the truth here first and avoid you just finding "support my advocacy work" buttons on my blogs or pages and thinking the worst or hearing rumors from others about secret content. There will never be secret content for people who can contribute, only the knowledge that you are supporting me and possibly a gift if the amount you contribute makes a gift financially feasible for me to give back to you and I have the energy to create such a gift on top of my work.

Most importantly I want to be clear that I only want people to give what they can and what feels right to them. If that is nothing, that is fine.

So when you see buttons here or there to support my advocacy work, do not feel pressure, do not feel obligation, just feel an opportunity to give back to me if you enjoy or have benefitted from my works and if you are financially able to give an amount that won’t negatively impact your life.

I want to thank all of you regardless of whether you can give back to me financially or not, because you all give back to me in a huge way. I will always be grateful to this entire community for the sense of purpose you have given my life in this work. I don’t know what I would do if I had no way of helping the ME/CFS community. Even in 2013-2020 before I took Abilify, when I could not make this work because I was too sick to use a phone or computer or camera or even communicate in any way whatsoever, I was planning this work, writing pieces in my head, going over them time and time again so I would not forget them, and imagining what I would create. You all have given me a way to, in some ways, fulfill my dreams of using my creative energy to help people.

So thank you all so much from the bottom of my heart. I love the ME/CFS community, I love all my fellow ME/CFS warriors and the people who help them or sustain them or befriend them or love them. I love this whole community very deeply and would do anything in my power to help all of you.

Love,
Whitney  
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Whitney Dafoe under bed sheets.

Post Exertional Fear

I had to go to the hospital on Thursday (5/4) to have my Jtube changed. It’s recommended that I change it every 3 months but going to the hospital is such an ordeal and my health has been so unsteady and often precarious lately that I kept postponing it until it had been over a year since it had been changed, so I had to just schedule it and make the arrangements.

I have done this trip to the hospital at least 10 times in the last 4 years. I take Ativan when the ambulance shows up to take me there on a gurney and during the procedure they give me fentanyl. Then I take a second dose of Ativan when the Fentanyl starts wearing off. This combination lowers my stress response and has always protected me and kept me from getting worse from the huge amount of energy required and stimulation I’m exposed to.

It’s always incredible getting out of my room and experiencing the real word first hand after being in my room for months or years. Seeing the sky, and the trees, feeling the weather and the seasons, and breathing real air, but also seeing a world of people filled with lives; Jobs, career paths, plans for their future, relationships or marriage, kids, outings and activities and hobbies of all kinds; full, healthy lives. This is probably the most awe inspiring thing for me but simultaneously devastating.

I survive, as I have explained in blog posts like these:

 Making Your World Smaller

 The World Is There But It’s Not There

by what i call "making my world smaller". I don’t let myself even think about any of the things I cannot do. I remove them from my world and my reality, and shrink my world to just the things i am able to do. And then I fill that world with as much of those things as I can. This way I am not longing for that which I cannot do, and the things I can do take on new meaning, acting as small versions of the much larger activities I would be doing in real life to fulfill those needs and desires. Like instead of writing a book, I write a blog. Instead of working as a photojournalist or documentary photographer all over the world, I photograph my life with ME/CFS in bed. It’s not what I wanted or planned for my life, but these things fulfill me when I don’t let myself think about what they could be, what my life could be or what I do not have. I am actually happy a lot of the time here in bed when I am able to work on things.

But seeing people living full lives and the beauty and freedom and ease of the outside world completely blows open my tiny walled in world of safety and manufactured meaning (getting excited by things I would not even be working on if I was healthy, like making headphones which I am completely obsessed with right now). Suddenly I am exposed to the vastness and openness of the real world and it puts my tiny little life that is normally full of meaning and purpose into stark perspective. I suddenly feel desperate to speak, to make meaningful, deep friendships and relationships, to move freely and eat and drink and drive and do whatever I want to do, letting any thought lead to action without hesitation, reflection or consequence. At the hospital it’s right there, all around me. And I can feel real life flowing through everything.

And then I have to come home and I get wheeled into my room and watch the sky disappear as the doorframe slowly slides over it and covers it with my very familiar ceiling and I am back in my little world again, only with a head full of the whole world. It has always been a painful, sad and confusing time getting back to my routines and walling off my world and forgetting about all that I am missing again.

But this time it had been over a year and the exposure to the world was more intense than it has ever been. Maybe it is my age, or the time I have spent in bed, I don’t really know, but it created a desperate, immediate need to be healthy and be a person full of a life again. I just needed it now, I suddenly felt I could not keep living the way I have been. When I came back into my room afterwards I went a bit mad, more aware of the loss my life has sustained than I have been in a long time. Or at least thinking about it more. I was stuck here in bed, but had this urgent need to talk to people and have friends and cook and eat and bathe and just be free. I can’t remember ever feeling such desperation for a healthy life, I have always slowly shrunk my world, kept a militant control over my mind and focussed only on what I was capable of and just did not let my mind go to all the things I could not do or all of the things I had lost.

I have also felt more sensitive to things I was not sensitive to before going to the hospital. I have been hitting a sudden limit where i just have to stop doing something like typing a simple message or I can feel I will crash. Often tines this mental wall goes up in the middle of writing a short message and even just hitting the send button would make me crash. I am honestly terrified of loosing capabilities I have had since I started taking Abilify. I cant loose the ability to write again, I just can’t, everything I do now depends on it.

I have no idea how I am able to write this post right now, I have been unable to send more than a few sentences to the people I know online since getting back from the hospital. For whatever reason, my whacky stress response is letting me do it, so I am doing it! ;)

But the fear combined with the desperate need to have that world out there that is completely unreachable to me has brought me to tears many times in the last few days.

I am sure all of this sounds very familiar to all of you. If we are able to do the miraculous work of making peace with our small, limited world in bed, in a room, in a house, or with a limited life out in the world, we always have to leave these safe boundaries at some point and are exposed to everything we have been missing for years or decades. And then we have to go back to our limited life again. And it is devastating no matter how severe your illness is.

And we all often have to push ourselves outside of our limits sometimes for medical needs like doctor visits or medical problems related or unrelated to ME/CFS. And in the days following this necessary overexertion we have to face the terrifying unknkown about where our health will wind up landing once we have settled again. Will we get worse? If so, by how much? What things that we have been able to do will we now be unable to do? How much more isolated and confined will we become?

This state of unknown is honestly terrifying for me and I am sure all of you as well.

The only thing I am sure of is the importance of doing as little as possible after an overexertion, then it’s a matter of letting time pass and hoping for the best. Part of the horror is the fact that what’s done is done, and there is no going back and changing any of it or doing less. But it also comes from the helplessness caused by a lack of any medications or treatments to lessen the impact it has on our health. There’s nothing we can do but wait and see what ME/CFS does to us. Whether we settle back into the same place we were at before, or if we have to give up sacred, beautiful parts of already painfully limited lives.

Will I be able to keep writing? Will I be able to keep in contact with people I care about? Will I be able to write enough to keep working on my projects? Will I still be able to keep brushing my teeth and getting up to go to the bathroom? You all have your own terrifying set of questions like this.

All we can do is wait and see, knowing that even if we get worse, our bodies are constantly changing even if they feel static and stagnant, they are not. They are always fighting to find balance and keep us going and we won’t stay in any condition or state of severity forever. Even in our most dire moments, we can keep going. If we keep breathing through the pain, keep breathing through the isolation, keep breathing through loss, the loneliness, the complete lack of life; If we keep breathing, soon we will have survived another day.

And research is evolving at an incredible rate with new ideas for treatments coming soon from all over the world - and then a cure.

The most we can do is our best, if we have done that, we cannot do anymore. Sometimes the best we can do means getting worse, and ME/CFS is to blame, not you. And you are not alone, I’m here with you. Getting worse with you. Scared with you. And desperate with you. And sometimes having beautiful days and feeling alive and free. We are all in this together and in that we can find the strength, courage and wisdom to fight anything ME/CFS has to give.

Keep breathing. Know that nothing is forever. And together we can rise above the fear.

Love,
Whitney  
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