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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Beauty And ME/CFS

I posted last week about my sick body feeling gross and the feeling of being unlovable because of this.

You can read that post here

https://www.whitneydafoe.com/mecfs/?post=my-sick-body-feels-gross-and-makes-me-feel-unlovable

After publishing this post so many of you wrote wonderful comments about how beauty comes from within and anyone worth my time would see that through what ME/CFS has done to my body physically in this moment.

This is true, and I want to expand on this because it’s very important for us all to remember.

The bigger truth is that we are all gross. Human bodies are all filled with blood, mucus and slimy, gooey stuff of all kinds. We all smell bad. We all poop. Part of what happens when we are attracted to someone or fall in love with someone is that we see past all the gross things in that person’s body. That’s why being intimate with someone you love isn’t gross. If it weren’t for all those chemicals firing in our brains blinding us, it would be disgusting.

The idea of a clean, perfect body is an illusion created by the fashion and beauty industries. They sell us the lie of a perfect body which makes us all think we are imperfect and need fixing. Then they tell us what to buy to make us perfect and we feel we have to buy these products to make us look like the images of fake bodies we are constantly bombarded with. But these bodies they show in magazines and advertisements are just as gross as everyone else as soon as the lights and makeup and photoshop are taken away. What you see is just a disguise, like a halloween costume.

We are all souls trapped in big bags of rotting flesh. Including supermodels.

And these bags of flesh get old and then die one day. They don’t even last forever. They’re constantly on a path towards falling apart.

What is important is the soul that lives inside all our disgusting bodies. This is where true beauty resides.

Most ME/CFS patients have had so much of life taken from us, we have all had to look inward. I find that because of this, ME/CFS patients are some of the most beautiful, radiant souls I have ever known.

There are three ways I want to distinguish in which ME/CFS patients have looked inward in a way that is unique to most other people.

1)
Without facing some kind of hardship, people tend to coast through life without ever being forced to look at who they are or question themselves or the world. ME/CFS patients have had to question everything in our whole existence. All of society is constantly blaming us for being sick, and we have all had to search long and hard to find the truth that we are legitimately sick with a real illness. No one with ME/CFS is here without having to do this work. In the process of doing this, we learn so much about ourselves and who we are. Which makes us strong, deeply understanding, compassionate people.

2)
We have all lost very basic things that most people take for granted in this life and don’t ever learn to appreciate or understand. Things like just being able to physically move to do what we want to do, being able to walk, being able to pursue a career that we put time and energy into, being able to tolerate the company of other people, being able to eat food, being able to leave the house or our beds, even being able to simply move. This all causes a lot of suffering but it also teaches us the value of being alive and what is important in this life. And it forces us to look inward and find meaning and purpose. beyond the things that distract most people for their entire lives.

3)
Most people never have to face who they are. Most people don’t really even know who they are, they are constantly distracting themselves and never have to figure it out. But when we loose all the distractions in life that keep healthy people occupied like jobs, entertainment, education, etc, we have to not only confront and live with who we are, but learn to appreciate and love ourselves. This is the only way to survive ME/CFS.

All of this work polishes our souls like pearls and makes us radiate so much beauty from within, where it really matters, inside the bag of rotting flesh we call our bodies.

We are all beautiful in all kinds of different profound ways, and have so much to offer the world. This is why I always say that when they find a cure, there will be a huge rush of wisdom into our culture as all these wisened beings are suddenly free to be a part of society again and share what we have learned.

We may feel gross on the outside, but when we do, let’s remember how gross everyone is, that the idea of perfect Hollywood outer beauty is an illusion, and how truly beautiful we are on the inside. We have so much more to offer the human race than any super model could ever dream of.

We can offer the world true beauty without any kind of disguise. And we can do this now, from bed. We may feel that because we are isolated, we don’t have an affect on the world, but this is not true. Our beauty radiates beyond these walls and changes the shape of our culture and our whole world.

ME/CFS patients make the world a better place for everyone, though most people never know it and we will never be thanked for it. We do it because we see the beauty and dare to survive for that beauty against all odds.

All bodies are gross. But not all souls have done the searching that we have done to shine with such beauty.

You are all so beautiful.

Love,
Whitney
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