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 looking at an iPhone screen.

New Romantic Adventures - part 2

Unfortunately part 1 of this post got delayed. I wrote it on day 3 of our new relationship and I meant to post it then, right after it happened. We planned to go public about it and I was going to include her name. But things immediately got complicated between us and I felt I shouldn’t add making our story public to the mess.

After 3 lovely days chatting things got complicated and it dragged out for 3 weeks until it blew up one night and we are now not even able to be friends anymore. My worst nightmare outcome for us and the very reason I pushed her away all these years. I tried to keep our original relationship in a time capsule.

This is a hard thing to write about. It’s not the sort of thing that is usually shared publicly. But I’m trying to make my life an open book for the sake of ME/CFS awareness so I will say as much as I can.

I refuse to speak badly of her and I don’t want to, nor do I have permission to, tell her story which is necessary to fully understand what happened. So I will have to be somewhat vague. I apologize.

What we were attempting was very complex to begin with. She is married and got permission from her amazing husband to have a relationship with me. I have severe ME/CFS and can’t speak. And we don’t live anywhere near each other. Which means we were attempting a polyamorous long distance text only relationship with the added factors that ME/CFS throws into the mix. That’s a lot. But given the opportunity how could we not try? I thought we had a strong enough connection that worst case scenario we would just go back to being friends. But I underestimated the challenge of text only communication.

That is ultimately the main thing to blame for what happened, precipitated by other things she was going through that I won’t go into.

Plain text communication is a bit like a Rorschach Test. It’s just words stripped of facial expressions, voice, body language and even things more subconscious like probable pheromones that communicate emotions like anger, happiness, sadness etc. There is a lot open to interpretation.

Things started to fall apart when I wrote something without being careful enough to be precise with my words and my meaning got badly misinterpreted. The misinterpretations just stated snowballing from there. I would write to her explaining the misconceptions she had, and she saw anger where there was only love. It continued like that for three weeks until frustration turned to anger to the point of hatred on her part.

I’ve never experienced anything like it. I don’t ever get in fights with girlfriends because I just communicate. Fights are caused by lack of understanding or communication. In this case both. It was quite a shock and very sad because I knew it was all because of misinterpreting one sentence of written text. I knew that if we could even just talk on the phone the tone of my voice alone would have diffused the whole thing. The truth is I may not have been in love with her anymore after what was said but I still cared about her and wanted her to be happy.

We wound up saying goodbye. The last thing I said to her was that despite everything, I hoped things continued to improve for her and her life was fulfilling and full of love.

I spent the next day incredibly sad. I had carried her love with me for 18 years and we both used it as a kind of security or comfort blanket - knowing she was out there and truly knew me and loved me. That was always in the back of my mind and helped take the edge off the harshness of the world.

That was suddenly gone and I felt this horrible vacancy where it once thrived.

I spent the day laying around pouting. I felt better the next day though after being lucky enough to get sleep. I’m ok now. It is what it is. There are other people in my life who love me and I have consumed myself again in excitement about all the different projects I’m working on and can work on again after all those years of nothing but darkness. I actually just got a beautiful email from a girl I met when I was too sick to be in a relationship but have had a huge crush on for years regardless. It was a long email telling me all about what she’s been doing since I last saw her. I loved it. I will write more about her in another post. It’s a beautiful story.

Love is possible with ME/CFS. That’s not why this relationship failed. It was a contributing factor making it hard to clear things up between us because I can’t talk. But it was the medium of text only communication that led to ruin.

Given the opportunity I would try a text only relationship again. I would, however be more careful this time about how I worded delicate topics when one of us was upset. My carelessness in a one sentence text is what started the landslide that we never recovered from.

So don’t take my experience to mean ME/CFS ruins relationships. Given a different time for her if she was in a different place and not married so things were less complicated I think it would have worked between us at least for a while.

Wear your heart on your sleeve. Have the courage to give love a chance. I believe it is possible in some form for all of us if we are open to it. For me, a relationship may not be possible right now. But love is, and I am loved by some incredible women.
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