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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Blog Archives
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Year / Month
Whitney Dafoe gazing up at the ceiling.

Update On My Health 2022

2019

In 2019 I was bedridden, couldn’t speak, was dependent on a feeding tube and PICC line for food and fluids, couldn’t tolerate any human presence in my room without earmuffs and a towel over my eyes, couldn’t use a computer or phone, couldn’t write by hand, couldn’t communicate in any way because the human connection it created made me crash. I had to use wadded up paper towels placed on certain things to try to draw attention to them and hope my caregivers would guess while I held still with earmuffs on and a towel over my eyes, which often took hours and made me so, so sick. I couldn’t move for most of the day, having to lie perfectly still without moving a muscle or I would crash. I was sensitive to sounds outside, especially talking even from the neighbors. I could go on but I think many of you know my history well enough already and get the idea.

2020

I started Abilify in 2020 and after 3 months I was able to listen to music for the first time in 7 years. This was the first sign of improvement. Soon I could use my phone to write down a lot of the things I had been thinking about over the years. I wrote long emails to Tracie White about my life and ideas I had about ME/CFS and what it was like to be so severe. She was able to use some of this in her book "The Puzzle Solver/Waiting For Superman", but not all of it, I have used some in later Facebook posts myself. Soon I could use a computer again, and communicate even more freely, sending texts to my sister and then family and caregivers. I discovered I could use my phone to photograph and have been photographing ever since. And for the last 6 months or so, I’ve been able to let people into my room and gesture with them without Ativan if it is about something important so that it generates adrenaline in me to protect me. I can’t just have someone come in to say hi for example. There has to be a necessity there. (see my post "Necessity and Energy" for a longer description of this pattern: www.whitneydafoe.com/mecfs/?post=necessity-and-energy). I can have my caregiver come in once a day to bring me all my daily necessities like refill my food bag and hookup a new saline bag, etc without a towel or earmuffs and I can listen to her talk and respond with gestures with no Ativan. Again, only because it’s a necessary trip into my room.

The first year after starting Abilify I had mental energy to work on things in bed all day without really needing to rest mentally. I soon had so much extra mental energy I came up with things to make just to have fun making things. I made my sister 2 websites for her future events/design business that she can’t even use right now because she just had 2 babies and COVID was preventing any kind of events. But I did it for the fun of making them. I started all kinds of projects, started photographing again, created an Instagram page, I redid my photography website with an ME/CFS blog which took hours and hours of work. And many more projects. I even started working on the foundations of a business making headphones by hand. You can read more about my headphone work and business on my website here: www.rhythmdevilsaudio.com

2022

I have accepted the fact that starting last summer in 2021 I started getting worse again. It has been slow, but I am now much worse than I was last summer. I have slowly lost more and more of this mental energy. I currently can only work on one thing per day on a good day. Like writing this, and this wears me out and I have to just lay down and listen to music the rest of the day. I’m specifically writing this first thing in the morning so I don’t get worn out before i can do it. And I can feel myself wearing thinner as I write this. The bright light I woke up with is fading. It’s really sad and challenging for me to get better and start all these projects and then get worse and not be able to see them through. I feel frustrated most of the time these days, wanting so badly to be able to work on things even if I’m stuck here in bed. Sometimes I want to scream at the heavens: "is it not enough to keep me bedridden??!! Can I not find some kind of life here in bed??!!!" But this is ME/CFS.

Already after writing this much, I feel the need to lie back down and rest. Which makes me want to cry.

But what I haven’t lost is the lowering of my sensitivity, which is still such a blessing. I can still have my caregiver come in without earmuffs or a towel over my eyes and I don’t have to hold still. If I’m not feeling too bad and my parents need to tell me something, they can sometimes come in too. If I’m not feeling too bad, my sister and her kids can come in for like 15 minutes and visit without Ativan. I’m usually asleep when they’re here though as my sleep schedule is rotating and has nothing to do with the sun or the moon.

So my brain/mind is much, much worse than it was a year ago, and cannot sustain working on things or sometimes cannot at all. Which is devastating for me. But my sensitivity has remained lower which makes my life easier and makes things easier on my caregivers as well.

I don’t know if Abilify has worn off, or what to do about it. I don’t have the energy to read what others are doing in the Abilify Facebook group. I just hope something else will come along soon and allow me to continue working on projects from bed at least. I was actually pretty happy in a way in 2020 during that year of mental activity despite having such a severely restricted life still. I mean I missed the world and other people and my life, but I got excited about working on things and felt a kind of satisfaction about my life from working on them.

The Last Month

I got an infection in my bloodstream from bacteria getting into my PICC line about a month ago and it made me worse and I still haven’t recovered from it despite clearing the infection. I now mostly can’t do anything, and spend the day watching simple TV shows or just listening to calm music on my side. I bought a special pillow that has a hole in the middle of it so I can lie on my side listening to music with iems in my ears (iems are like earbuds but better sound quality). I either don’t sleep, or I sleep for 24 hours. And my mind is in such terrible shape. I have about 12 projects I’m really excited to work on and I cant work on any of them. It’s so sad for me because I’m so inspired to work on these projects. ME/CFS advocacy projects, art projects, and the business that I spent the last 2 years building up making headphones (www.rhythmdevilsaudio.com) and is just now getting attention from the public as I am having to pull away from it because I simply can’t do it. I can’t even keep up with the emails from people interested in buying my headphones.

I spend most of my time feeling completely overwhelmed by all the things I want to be working on but cannot even engage with. They sit in front of me like mirages, seen but constantly fading and unreachable.

I’m still grateful for the improvements I have made since before Abilify, but I’m devastated by loosing so much all over again.

So that’s where I am now. Lots of uncertainty about where this is heading because my mental energy and clarity seems to be decreasing steadily. But I am still much better than I was in 2019 and remain ever hopeful of new treatments and a cure on the horizon.

I just thought I should share, since my story is so public. Getting better and then worse again is something a lot of us have faced and it is absolutely devastating for all of us.

ps.
Please do not respond to this in comments or private messages to me with health suggestions. My father knows every prominent ME/CFS doctor in the world, and I honestly just do not listen to health advice from other patients. I know you're just trying to help and I am grateful for that spirit but it’s not worth my time and energy. "Have you tried…" I stop reading right there. ;) There’s only so much I can read and some obscure herb or magical healer isn’t one of the things I want to hear about. With respect. The only exception in this case might be if someone has had Abilify stop working and got it to work again. I would like to hear about that.

We have all experienced these improvements and then relapses or declines over the years of having ME/CFS. Let’s all try to breath out a bit of the burden and expectations we place on ourselves to perform or produce and let ourselves just be sick. Sometimes that’s the best we can do. Right now, that’s the best I can do. And I’m really struggling to accept that.

love,
Whitney
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