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 ME/CFS Awareness Day 2023

(I am currently in a relapse and only able to write this on Ativan)

Today we honor those ME/CFS patients who have suffered the most, been neglected the most by the medical and scientific communities and society at large. Whole, beautiful people who have been intentionally neglected to the point that they are silenced, alone, without proper care and profoundly and needlessly suffering. Most are barely alive, living alone in tiny corners of the world wherever they can find. This is criminal neglect being committed by the entire world, and every single country in it because ME/CFS is a curable disease. And I promise you, someday it will be seen as such.

Most people don’t know this, but there are 2 stars in the night sky devoted to ME/CFS patients.

There is a Dark Star and when every ME/CFS patient dies, all the suffering, pain, desperation, heartache they endured throughout their lives goes to this star and is held there.

And there is a Bright Star, that holds all the dreams, loves, aspirations, and life long goals lost when an ME/CFS patient dies.

I could point these 2 stars out to you, but I haven’t seen the stars in 11 years.

Someday there will be a cure and the Dark Star will implode and release all of that suffering to so those lost patients can be at peace. And the Bright Star will shower us with so many dreams, loves and pure beauty the world will light up for weeks.

Until a cure is found, we must fight for the world to recognize ME/CFS as a legitimate illness and treat us like human beings instead of dogs begging for scraps. We are human beings. No matter how they treat us, we are human beings. And the whole world is guilty of criminal neglect and abuse.

It is important to remember this on ME/CFS awareness days. Remember our suffering and write about it. But let’s be honest, it is hard to get these words to reach outside the ME/CFS community.

So I want to start a new tradition on Severe ME/CFS Awareness Days that I hope this community will keep doing no matter what happens to me (I’m not planning on going anywhere ;)

Write about the injustices we face and hope these words reach outside this community. We can never stop doing that. Because someday they will see us. And even if our words don’t reach far at the time, it is important to have a record of us telling the world what is happening to us and the lack of any response from anyone dating back years.

But this Severe ME/CFS Awareness Day I want you all, in addition to trying to get others to get us the help we need, I want you to take action yourself and do something to help a severe ME/CFS patient.

Right now. Today.

One of the worst parts about severe ME/CFS is how isolated it makes you. There is no way to explain the sense of isolation severe ME/CFS patients feel - like the whole world has forgotten them or doesn’t even exist anymore at all.

The leading cause of death from ME/CFS is suicide. Part of that is from a lack of hope of getting better, but part of it is loneliness and isolation. Which we as a community can do something about right now, today, without any help from the government or societal systems that have failed us.

Every Severe ME/CFS Awareness day going forward I want everyone capable, patients, caregivers, supporters, doctors, spouses, loved ones, to find a severe ME/CFS patient on social media or elsewhere and reach out to them. It doesn’t take much to make someone feel seen and that someone else out there cares about their life. If they have a social media profile, look at it and find some things you like about them or their profile.

And then just reach out to them and write them:

1) Introduce yourself, and just say hi and who you are.
2) Empathize with what they are going through
3) Tell them something you appreciate or respect about them
4) Tell them that they are not alone and that you are thinking about them
5) Tell them that you hope things get better for them soon and remind them that all things change and that just as they got worse they can also get better.

This simple act might only take you 5 minutes, but it could be the difference between that person killing themselves or deciding to hold on for another day, week, month, year.

A cure is coming, I promise you all. And we need to take care of our community and try to stop as many suicides as possible and try to get as many ME/CFS patients over the finish line as we can. Bringing back their lives and bringing back the world to them.

Let’s try to stop letting ME/CFS patients go to these stars of darkness and light and keep them on this earth where once cured, they can thrive, love, and run free like they were born to do.

Trying to spread awareness outside this community is important, but so is direct activism within this community.

Please, let’s do this every year on Severe ME/CFS Awareness Day. Anyone able to, "sponsor" a severe ME/CFS patient and reach out to them please stop what you are doing and do so now.

We may be neglected but no one can take away the love we have for each other, and we have the power to spread that love to those who need it most.

Love,
Whitney  
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