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 scared.

Fuck You ME/CFS

I’m really scared right now. It is a fear that is raw, primal and incredibly vulnerable. It is fear for my basic way of life, fear of loosing the tiniest bits of life I have managed to scrape together since improving a tiny bit a year and a half ago. I’m afraid for my life itself because when you know severe ME/CFS, you know a living death.

I went way past my limits three days ago having two friends come over and hang out with me in person. Two friends I met on the internet, one whom I’ve known for over ten years. I took Ativan so I could interact with them without it hurting me. But one side effect of Ativan that has always been dangerous is that it makes you feel like everything is ok. So I pushed myself to just hang out with them the way I wanted to, and do what I wanted to do with them the way most people live every single moment of every single day without thinking twice.

But you can’t live like that with severe ME/CFS. Everything must be controlled, and monitored and limited. An enormous effort must be constantly put into monitoring your energy level and your energy expenditure and evaluating every action based on previously engaging in that action and what the outcome for your health was from that action. I didn’t do that three days ago because I haven’t had a friend over to visit for fun in over ten years. I had no routine to follow. And I didn’t realize going into that day that I was heading into uncharted waters.

My life has been a consistent routine for 9 years. I do the same things in the same way, at the same time every day, and if I ever introduce something new I introduce it gradually with incredible caution while monitoring how I feel and then monitoring how it affects me afterwards.

I didn’t do that three days ago. I just had fun. I was spontaneous. I was human.

Spontaneity and humanity are the spells of death for ME/CFS patients. We must become robots or we wither and die. I let my heart beat for just half of a day and after the excitement of them being here faded I checked in with myself and it hit me. "What had I just done to myself?" I felt absolutely horrible. My head was swimming in thick haze. I was too exhausted to clean up my room and put things back after clearing them away to make room for their chairs. I just had to stop and lie down and then the fear hit me.

What was done was done. I could not take it back. And I had no idea how it was going to affect me. I was powerless and helpless and could do nothing but wait and see and pray to this cruel world that I would recover and be ok.

The thing is that sometimes when you overdo it like that you are not ok.

I got worse, plummeting into the worst 3 years of this illness - an absolute living hell - after overdoing it for just one too many days in a row in order to be filmed for the documentary Unrest. I had just pushed myself to communicate for multiple days during a time when I could hardly communicate except by writing out cards and leaving them out for my caregivers to read and try to figure out, which often took painful long hours. But I had to communicate these things sometimes. This time because there were elements of my routine that were hurting my stomach and I needed to make changes or my stomach was going to get worse than it already was. And the next day the Unrest film crew was scheduled to come.

I knew I needed to rest that day. I could feel it. You know the feeling. It is a weakness that comes from someplace deep inside. I always think of the quote "Like butter spread over too much bread" by JRR Tolkien. But I also knew how important this documentary was. So I pushed myself and hoped for the best. But the worst happened. I began a steady decline in health the next day that kept going seemingly forever past what I ever thought was possible. My health and my energy limit just kept going lower until I could no longer move for most of the day, could not communicate in any way via hand writing, text on a phone, gestures in person (I could not move a muscle with a person in the room) or any other way except to do things like leave out paper towels folded into arrows pointing to things and hope my caregivers would eventually figure it out, which often took hours until I was on the verge of tears from the frustration and exhaustion and painful lack of energy. And I knew I would get worse every time I communicated like this.

Today I lie here not knowing what is going to happen to me. Will I loose all the tiny bits of life I have scraped together over the past year and a half? Will I begin a descent into another living death? Will I loose a beautiful connection I have made with a dear friend who I have grown to love with all my heart? If I do will she still be there if I ever come out of this? Last time no one was left when I re-emerged from the darkness. Will I be alone again? Will I lose the ability to communicate my basic needs? Will my caregivers start hurting me again everyday because I am unable to tell them to stop doing a certain thing a certain way? Will my stomach fall apart and stop accepting food even from the pump? Will I starve to death? Will I loose the little joys from bits of things that have brought so much light into my life this past year and a half? Will I return to stillness and all things darkness?

Fuck you ME/CFS. Fuck you for taking and taking and taking from me. Fuck you for making me so terrified when I let out a bit of humanity. Fuck you for the uncertainty. Fuck you for all the loss. Fuck you for the terror. Fuck you for the horror. Fuck you for the darkness. Fuck you.

No matter what happens, I will not roll over and die. You will have to take my life from my cold dead hands.
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