Whitney Dafoe
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  Best ways to donate to ME/CFS Research  

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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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update-2026
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2026 Update

Accessibility:   The video is audio only

Listen to this post on my podcast

It’s very hard for me to write this right now, my mind is lost to me in a cloud of haze, dull fog and strong migraine auras, like my brain is a watterlogged sponge constantly spinning on a wheel. But I know a lot of you are wondering why I’ve disappeared in 2026, and right after a rather exciting video post about talking again.

I know I don’t owe the community an explanation, we all understand that if someone goes a bit quiet, it’s ME/CFS and they’re crashing or something else medical related is going on. (it’s important to establish this with all your friends by the way - that there is no pressure to respond and if your friend doesn’t respond, you’ll always assume it’s because they’re just too sick to). But I always want to try my best to stay connected with you all and contribute something to our collective mindstream when I can.

I had a very serious medical incident happen right after posting my last video about talking again and have been through a lot. I’ve made a video update about it, or several actually, but haven’t been able to get them ready to post. So coming soon!

Im ok now, I’m recovering and my body is going through "growing pains" or maybe more accurately "healing pains" adjusting to new meds and a possibly long healing process.

Lately I’ve been sleeping 12 hours a day and waking up to strong migraine auras along with brain fog and trouble focussing that have left me staring into space or with my eyes half closed listening to ambient music or on better days, Scandanavian slow jazz all day and barely able to tolerate the sound. (But kind of forcing myself to because I refuse to give up on music. It’s one of the few things I got back after Abilify in 2020) And doing nothing, I can’t seem to work on anything or do anything beyond barely taking care of myself (often with a shit load of will power; Brushing my teeth can feel like climbing a mountain not to mention all the other meds and routines)

This picture here in this video is what I look like most of the time.

I’m ok, we all have these setbacks. But they are so hard. Getting worse sucks. You can quote me on that. 😊 I keep making plans based on my current health and then my health (and thus energy limit and ability to do things) changes and chaos ensues when I can’t meet commitments I’ve made. It’s devastating because those commitments are all stepping stones towards bigger dreams that I want to make happen so badly.

Right now I’m just going to batten down the hatches and weather the strom and hope for the best. That’s often the best we can do, and really it's a miracle if we can achieve that given how the cards seem relentlessly stacked against us at all sides.

You know, one thing I’ve been thinking about is just how F’ing hard/rare it is to get better with ME/CFS and how easy it is to get worse, or way, way worse into terrifying hell realms. There are millions of things I could do right now that would make me worse and which I have to avoid or moderate or handle with extreme restraint, but I don't know of anything that would make me feel better; I know of things that keep me stable and not get worse or get less worse, yes, but improve? I don't know of anything. I work so hard with my routines and meds and supplements just to try to stay afloat.

And that is so hard to live with. Putting so much of our energy into avoiding hell, into trying not not to get worse. Always rowing, but never getting anywhere because the current against us is so strong. Living surrounded by land mines and nothing but desert for miles.

But I remember the trees, I remember the light and I will keep fighting forever to feel it again on my face.

I appreciate all of your well wishes, but please, there are so many of us having such a hard time right now, please send them to someone who is struggling and sicker than me. I’ll be ok, this is not meant as a plea for help, there are others suffering so much and I would want any prayers/wishes/energy sent to them. 💙

Love, Whitney   ❤️
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