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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TALKING Again In 2025!

NEW watch my video above   😍

Accessibility:   Listen to this post


   

Listen to this post on my podcast                

I started eating again in 2024. After 11 years not eating a crumb of food or even drinking a drop of water. I got all fluids and nutrition from tubes inserted into my body. For 11 years.

In 2025 I have another big improvement to announce.

I have started   ‼️ TALKING  ‼️  again after 12 years of not saying a word to anyone!

What will 2026 bring

Talking has been truly AMAZING. A slow process, it started when I slowly started feeling like I could talk again, but my stress response was still very high about it and it was hard to breach that stress wall and say the first words to someone. I first talked to my best friend, who I am really close with, comfortable with and feel very safe with so my stress levels are lower with her. I practiced talking to her on calls and video calls for about 6 months before talking to anyone else. Then I moved on with a few more close friends. It was hardest with my parents and caregiver because of the incredibly high stress I have been through with them in the past during my sickest years - my stress response seems to still be high with them - sensing danger likely due to a PTSD response mixed with the messed up fight or flight response in ME/CFS. But I am now talking to everyone! It is sooo much easier with my caregiver to just tell her what I need instead of pantomiming every little thing for sometimes a long time until she figures it out. What a relief! And I can have conversations with friends and loved ones!

I just said goodbye to a lifelong friend who is dying and I got to talk to her on the phone and tell her how much she means to me, the impact she has had on my life, how wonderful she is; And then say goodbye. It was profoundly sad, but it meant the world to me that I got to talk to her and say goodbye at all. She is not online and does not text, so it would have been so devastating not to have that last connection with her.

I also recently had a 2 hour meeting with my parents about a new project for Ron’s lab! And I was tired afterwards, but had no PEM from it.

And talking just feels sooooo good and natural and - so human! Relating to people in a much more direct way has been incredible.

I am so happy to be able to tell you all this.  😍

I sometimes stumble a bit talking, like my mouth and tongue just aren’t as coordinated as before, but that is getting better and otherwise it is now easy and very interestingly it feels natural like I never stopped talking. Though I like to think I sound much wiser now.   😊

I truly believe that none of the symptoms of ME/CFS are permanent

(excluding possible damage from Covid, but keep in mind that Covid research is still very very new. 5 years after HIV was discovered, we knew almost nothing about HIV, and that’s where we are with Covid research today. Some of the current research is surely accurate, but it is true without question that there are more unknowns than knowns at this point, and we should take current research finings with a few grains of salt and certainly not lose hope because of them.

But with regards to the frequent talk and worry on social media of "permanent damage" caused by ME/CFS, throw brain scans at me all you like. The brain can re-wire, adapt, re grow, re purpose, etc and we know next to nothing about the brain. Some very specific simple test about something we know very little about is proof of nothing.

Every single doctor thought I would never get stomach function back, and I am now getting all my calories from eating real food. And no one expected me to start talking again. But here I am.

I don't know how my stomach has started working again or how I started being able to talk again. It is most likely from Joshua Leisk’s Born Free Protocol. I started his protocol right before these changes started to happen and nothing else was changed in my medication or physical routine at that time, so I feel confident, but not certain his protocol is responsible. The Born Free protocol is very complicated though (really overwhelming for most people, myself included) but hopefully there will be better guides put together in the near future as well as training other doctors to help patients through the protocol. But please don’t just run out and start doing this protocol blindly or push yourself into it, it needs to be done right - in the right order and in the right way or you could severely harm yourself. And it is still experimental and may not be for everyone, remember to always listen to your body and do what feels right to you.

I am making a video of this post for you all to see me talking and to celebrate! You have never heard my voice before and that is totally crazy. But I am excited to change that!

I don't completely know what I will do with video content going forward, but let me know what you would like to see in the comments, I’m definitely going to be adding videos of me - talking - to my current advocacy work. I will probably start with some very raw and honest video diary type things with just one take where I talk spontaneously and honestly about how I’m feeling and aspects of life with ME/CFS. (probably a lot of me grumbling in the morning.   😊 )

And I would love to make edited videos with multiple cuts and different angles showing aspects of my routine and life, but that requires setting up a tripod and a lot of editing. And it's too much work for my state of health right now. The accounts claimed to be run by "one person" who make a video every 2 days with multiple cuts and angles and perfect color and editing are actually run by film crews, I am a filmaker and know how much work it takes to make videos like this. I say this not to attack these accounts, but because I think most people believe making these videos just takes a couple taps on a phone, but in truth it is a technical and involved process that involves a lot of artistic intent. And I want to explain why I can’t make edited reels like this full of cuts from different angles all the time - I would love to, and I could if I was healthy, (even if not every 2 days) and it would be so great for advoacy and awareness, but I don’t have a film crew and am too sick to do it on my own. And also too sick to tolerate constant film crews.

I also want to add video recordings of me reading my posts in addition to the audio versions so people with different sensitivities can still read, watch or listen to my writing.

Thank you all for all your neverending support and I’m sending all my love to all of you.    💙💙💙

Improving from severe or moderate ME/CFS is possible, and you can come back from even the deepest, darkest hole of hellish ME/CFS. I have experienced it.

Now I just need to get my brain back so I can think better and get out of bed!

I started eating again in 2024.
I started talking again in 2025.
What will 2026 bring❓

Sending love to all of you out there   ❤️
Whitney
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