Whitney Dafoe
/
SHOW THUMBNAILS

  Best ways to donate to ME/CFS Research  

Stacks Image 49

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:
Stacks Image 58
Stacks Image 60
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  
Stacks Image 107

Privacy Policy

Stacks Image 5868
Stacks Image 5870
Subrscribe to my Blog
By subscribing to my blog you get my blog posts sent to your email address so you don't need social media to keep up with my posts. I only send my blog posts, nothing more and you can unsubscribe anytime. By subscribing you also get to read my posts before anyone else.
Privacy:  I only collect your email address, nothing else. Your email address is kept secure and private. I do not ever look at the list of email addresses and they will never be shared.  
Stacks Image 6619
Stacks Image 6051
Stacks Image 6127
Stacks Image 6131
Stacks Image 6135
Stacks Image 6139
Stacks Image 6143
Stacks Image 6147
Stacks Image 6151
Stacks Image 6155
Stacks Image 6159
Stacks Image 6163
Stacks Image 6167
Stacks Image 6171
Whitney Dafoe wearing a santa hat, looking down at the floor.

Planning for Chistmas

Christmas is upon us!

And now is when we are all making our Christmas plans. You all will have to make your own decisions about how much you plan to do and not do. It is of course up to you.

But I want to encourage you all to start thinking carefully about it now. Think about what you did in past years, think about what your state of health was at that time, and then think about how you felt after Christmas. Connect your activity and health level to the affect that Christmas had on you.

Now think about what your health is like this year. Is it worse than previous years? Is it better?

If your health is worse, please consider that the affect of doing the same things you did in the past will also be worse.

If your health is now better, don’t be too confident, remember that days like Christmas are complete unknowns outside of our routines so we don’t have a good measure of how the activity will affect us. What’s more, Christmas is full of so much emotion that it is very hard to watch your energy level and stop when you need to.

We are emotional creatures, not creatures of logic and we feed off of emotion. So it is very difficult to make logical decisions about your energy limits in the middle of an emotional experience. It is physically difficult to access the logical part of your brain that analyzes your energy levels and would tell you to stop when it is full of emotion.

So I want to encourage everyone to think about all of this and start deciding what you are going to do on Christmas now, coming from a place of logic. Make plans and then follow them on Christmas.

Only you can decide what is right for you.

But remember how horrible crashing is. You could very well get worse - possibly in a state that resembles hell- for months or years or permanently if you go over your limits and crash really badly. Is that worth it?

Also remember that when you go over your limits your mind becomes dull and numb and you won’t have the experience that you so desperately crave because your mind will just start shutting down. You will feel less, be able to think less clearly, interact with your family and friends less clearly. And you will likely forget most of what happened.

It’s just not worth going over your limits to try to have a singular experience. You can’t create lasting memories when you go over your limits because your brain shuts down. And the price you pay afterwards will take so much away from your life. Quality of life is the most important thing, and one day of foggy memories is not worth months or a permanent loss of your quality of life.

Think about the things you are able to do every day right now. And picture not being able to do those things anymore for months, years, or permanently. Is that worth one day of foggy memories?

Again, you have to decide, it is your life and it is up to you, but I want to encourage everyone to decide to do less and avoid crashing on Christmas.

Last Christmas I thought it would be ok to have my whole extended family into my room to open all the presents I got for each of them and put so much thought into (I love getting people presents). It lasted about 1 hour and it was so much fun, but it made me crash and a year later, I still have not gotten back to the health I had before that 1 hour of fun. I really wish I had not done that. There are things I could do everyday before last Christmas that I can no longer do. That’s 365 days of being more restricted and living less. All for 1 hour.

I have thought about having everyone into my room for 5 minutes and having them all open their presents at once and then quickly leaving, but I have decided that it’s not worth the risk. There are too many things I want to be able to do everyday and seeing people open presents for 5 minutes is not worth loosing my ability to do the few things I can still do in bed.

Please follow me, and live this Christmas without crashing. If that means you are alone, well I will be alone too, all day. If that means only spending an hour with your family, then just feel grateful that you are able to spend that much time. If you don’t expect to have more than you are capable of this Christmas, you won’t wind up let down.

So prepare yourself now for what you decide to do, and set your expectations and then rejoice in doing what you planned to do and having the experience you expected to have.

Remember, we are alone, but we are alone together. I will be alone here with all of you, thinking of my family and remembering past Christmases and wishing I could be the person I am and want to be.

But I will stick to my plan because I don’t want to loose my ability to listen to music, or type at all to text what I need to my caregivers, or write to you all here, or loose my ability to make photographs.

Please join me this year and live a crash free Christmas, whatever that means to you. Let’s join hands and live less on Christmas so we can live more for the whole rest of the year.

Love,
Whitney
<- Back to my blog

Tags: ME/CFS Resources

Previous Post    Post 100 / 220    Next Post
© 2025 Whitney Dafoe | Privacy Policy