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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Severe Brain Fog

NEW watch my video above

Accessibility:   Listen to this post


   

Listen to this post on my podcast                

[words taken from spontaneous video transcript and re-worked into (better) writing by myself]

I want to talk about severe brain fog, which is something I’ve been dealing with a lot lately. Not to complain, but just to try to document what it’s like while I’m in it, which is hard because you have to think to communicate well, and severe brain fog takes that away. So I’m not at the most severe place right now.

Something I think is unique about ME/CFS is that, unlike almost every other illness, it just keeps taking from you. There’s no limit, and whatever severity level you’re at, you always think there’s some limit where part of you, part of your life - it’s not going to touch.

But those of you who’ve had ME/CFS for some time know that there isn’t. It’ll take everything. At first, it takes your ability to exercise, but you’re still out in the world. And then it restricts you to your house, and then it restricts you to a bed. And then you would think it would stop there, but it doesn’t. Then it stops you from moving very much in bed and being very active in bed, and then it invades your mind, and that’s where it becomes an absolute nightmare.

Two weeks ago, I was just feeling miserable because I could think about all the things I wanted to do; All my dreams and goals, all the things that I could work on in bed if I had just 1% more energy, and also just the things that I love, the things that bring meaning and joy to my life, and the things that I find beautiful.

And I was really miserable because I could think about those things, but I couldn’t act on any of it. I couldn’t work on any of it. And if I tried, I would lose the ability to even think about it. But lately, I’ve lost the ability to even feel or think anything. When I was at my most severe and I crashed, I used to go into extremely severe brain fog, and I used to call it a thoughtless, feelingless void.

And that’s really the best way I can describe it. It’s like there’s just nothing there in your mind. And I’m back really close to that.

I’ve just got barely enough in me to make a couple takes of this video and ramble a bit because I can’t organize my thoughts. But even when ME/CFS starts taking from your mind, you think there’s some limit - something that’s yours, that is sacred and defines you in some way, or is just you in some core way that nothing, including ME/CFS can touch. But there isn’t. ME/CFS keeps going and will keep taking, and when it’s at its most severe, there’s nothing left, and you’re just laying there unable to think or feel or process anything around you.

So the world is totally overwhelming, and that’s when stimulus and sound and noise and touch and light, etc start to become too much. And I’m not experiencing that right now, but the inability to feel the things that my whole life I’ve loved so much, and that bring me so much joy even to think about is devastating.

I’m lucky enough to be able to listen to music and watch movies right now ever since Abilify. But listening to music right now just sounds like noise because my brain can’t process it. And I know a lot of you can’t listen to music, and I’m lucky to be able to do both of those things.

But when my brain can’t turn the sound into beautiful music, it’s not worth anything.

And watching movies, I feel like I’m just watching these moving images on a screen, but my mind doesn’t put them into something that means something to me. In cinema, they call it "the suspension of disbelief", where the movie sort of tricks you into not disbelieving that it’s just a film, and you fall into it sort of as real life.

So the filmmaker in me is thinking of that. The suspension of disbelief isn’t happening. (I couldn’t help but geek out for a second.)

I think I had 20 good minutes today where I could write something a little bit and then the rest of the day it’s just been this nothingness. And if you haven’t experienced the nothingness, the thoughtless, feelingless void, you have to experience it to know how little you can feel and think while still being alive.

At every level of ME/CFS you suffer. When you’re housebound, it feels like that’s the most horrible thing in the world, and then you become bedridden, and it’s like this whole new level of torture, and you just wish you could go back to when you were at that time when you were housebound - still complaining and really suffering. You wish you could go back to when you were housebound and really miserable, but that sounds wonderful now.

There’s always the possibility ME/CFS can get worse. So I have to try to remember that it can get worse right now and find gratitude and peace in what I have.

But trying to remember that it can always get worse is really hard. I have come to think that it is human nature to take what we have for granted, at least at such basic levels of existence. Like thought and movement.

Sometimes you just have to keep going and hope that it will all come back, because it always does with enough time. But for right now, I just feel like a big blob.

I really just feel like a big sack of flesh and bones.

Sending love,
Whitney  

PS. Just a reminder that this was recoreded and then the transcript edited later during glimpses of more clarity and less fog. Recording a video like this or writing something like this would be impossible in the midst of severe brain fog. Which is important to mention because the world only sees us at our best when we can express ourselves. When I’m at my worst I cannot think well enough to put words to how I feel and may often only manage to scream "freeeeeeeedom!” (and for many ME/CFS patients who cannot speak, scream silently)  
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