Whitney Dafoe
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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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Homelessness Is Not A Crime!

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The United States Supreme Court’s decision to essentially make homelessness illegal is unconscionable. Not having a home is not a crime! Yet after the Supreme court ruled that it was constitutional to make it illegal to sleep in public spaces, countless towns and cities are sure to follow suit in the United States and make it illegal to sleep in public spaces. (Illegal to sleep!). Sleep is a basic necessity and if you don’t have a home, you have no choice but to sleep in a public space.

Beyond the morals or ethics of this it has far reaching consequences for #MECFS and #LongCovid patients. How many ME/CFS/Long Covid patients have dipped into homelessness at some point for days, months, years or have been stuck that way? Way more than we wish to imagine based on their representation on X/twitter/facebook/instagram. Most of these patients are not on social media. When you lose everything, you lose social media too. And most of the patients who are worst off are either not diagnosed and so are not represented on social media or are not able or interested in a social media presence.

See my post called "The True Horror of ME/CFS" for a more detailed analysis of the true scope of the damage ME/CFS and Long Covid does to people’s lives:

Jail is not a suitable place for ME/CFS/Long Covid patients! How have we come to this place America? It would be cheaper to pay for housing programs for homeless people than to pay to imprison them, and it would also be so much better for their lives and their prospects of getting back on their feet in the future and getting housing again. And it would be cheaper to pay for ME/CFS/Long Covid research and proper ME/CFS/Long Covid care centers than it would be to pay to imprison patients who have a disease that has taken so much from them they cannot keep their homes!

It is not as if there is an abundance of un-owned land for homeless people to flock to outside city centers where they could just farm peacefully with the gnomes and the hobbits! Where are homeless people supposed to go when shelters fill up? And homeless ME/CFS/Long Covid patients likely do not have the energy to keep up with the gnomes and hobbits anyways. 😊. Farming on free open land is not an option like it was in the 1800’s in America for those healthy enough to have that kind of energy. You can’t farm land owned by someone else.

This is outrageous, immoral, and most certainly "cruel and unusual punishment" (unconstitutional in the constitution of the United Sates of America)

If someone loses their home, the chances of them regaining any kind of normal life after being imprisoned are so much lower than their chances of getting back on their feet after living in the streets or in a car or better yet a homeless shelter or ME/CFS/Long Covid care facility for a period of time. Our prison system is designed to keep people incarcerated, it is generally not rehabilitating and only leads to more imprisonment. Once you enter the system of incarceration in the United States it can be hard to get out of it. You become a "criminal" and everything you do is seen through that lens. So incarcerated people are often judged unfairly and then kept in prison without proper justification.

And the health of an ME/CFS/Long Covid patient even living on the streets is going to be so much better than in jail, where there are enforced rules requiring activity and exposure to all kinds of not only stimulus but also terrifying horrors and threats to your life; And absolutely no sympathy or understanding about an energy limiting illness like ME/CFS/Long Covid with sensory sensitivity, PEM, and a myriad of other symptoms that even most doctors are clueless about, let alone prison guards.

How many ME/CFS/Long Covid patients will now wind up in prison, beaten for the symptoms of an illness?

This is a shameful and disgraceful act by America. Shame on the Supreme Court!

We need to take care of those who are the worst off, not throw them in jail for having bad luck. And we need to take care of those with chronic illness and disability, not throw them in jail! Who is next on the list?

This is not the Soviet Union or Nazi Germany in 1940! We are talking about the United States in 2024!

"Leading The Free World" starts right here, with the homeless, the chronically sick, and the disabled, who cannot afford a place to live.

Food, water and shelter are basic necessities, not privileges for the lucky few.

#GetaGripAmerica #homelessnessISnotAcrime

Part 2:

There is something at the core of this that is very wrong about the way we see each other. A lack of compassion and empathy. And it is the core of why people are able to ignore ME/CFS and Long Covid. Everyone wants to believe that "good things happen to good people", it is the universal religion of humanity, even atheists usually believe in the myth of "good things happen to good people". Because when you are lucky and good things have happened to you, it feels good to take credit for them by thinking that you deserved them because of who you are.

There’s a kind of mental high in that.

And people will go to extraordinary lengths to hold on to this high.

When I lost all of my friends to prejudice about ME/CFS they fundamentally thought we were somehow different from each other, that I was sick because of how I lived my life, or who I was as a person, or the choices I had made in my life. But the truth is that I got sick because I just was unlucky, or if you believe in Karma, because of things I did in past lives.

When we see laws making it illegal to sleep in public spaces, it shows just how confident the public is that they will never become homeless themselves and wind up in that situation, because they think they are better than homeless people. But the truth is that most people who have homes are just more fortunate, they have had lucky childhoods and lucky upbringings and lucky educations and lucky encounters that have led to lucky jobs, etc. A lot of luck. A lot of times just one thing in this lucky past going the other direction could change a person’s life from having a home to being homeless. And a huge number of people are just one bit of bad luck in the future away from losing their homes; An accident that costs a huge amount of money and is not covered by insurance, an illness like ME/CFS/Long Covid that prevents them from working, a mental illness, losing a job, even a job that seems very secure, and not being able to find a new one. Etc.

And the same thinking applies to ME/CFS/Long Covid patients. People cannot come to terms with the idea that ME/CFS/Long Covid could happen to them. It is scary and it defies the "good things happen to good people" religion. So a lot of the public, subtly and not so subtly believe they will never get ME/CFS or Long Covid. They think they are better than people who get ME/CFS or Long Covid and that they deserve it because of how they live or who they are or the choices they have made.

This religion will never die unfortunately, it is ingrained in us as humans.

But we can learn to be more compassionate. And understanding why people can be so cruel and inhumane towards each other can help us cope with being treated so poorly. If we realize that it is really not about us. It is about a delusional way of thinking, someone grasping at an idea that makes them feel good, safe and secure about themselves, then it can help us externalize the brutality of their actions and the suffering it inflicts on us.

What is happening here in America to the less fortunate is cruel and unusual punishment. Which is unconstitutional.

We need to realize that we are all the same. We are not better than anyone else. If it is possible for someone to live a certain way, it is possible for us to live that way as well. Life is precious and so delicate. We can go from living the dream to a living nightmare in moments and that nightmare could never end.

So for ME/CFS/Long Covid patients, I think it’s helpful to look at acts of cruelty and inhumanity with some understanding of what is often the underlying mechanism behind it. We need compassion from healthy people to help us, but we also need to have compassion and understanding and empathy or why healthy people treat us the way they do so we can deal with it in a way that is better for our mental health.

And for those who are not sick or homeless, please realize how lucky you are and how close you are from that luck running out. This country is not defined by the well to do lucky ones, but by the least fortunate.

Love,
Whitney  
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