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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Whitney Dafoe holding a temperature sensor to his forehead.

The Gods Must Be Crazy

I have a flu/cold for the first time since my ME/CFS onset 19 years ago! I’ve gotten little mild sore throats but they go away in a day and I don’t actually get sick. Everyone I live with has gotten sick many times over the years and l never do. But right now I have a fever, my head is all congested and woozy, my nose is running and I’m coughing and hocking up phlegm. A REAL cold/flu of some kind.

What does it mean?

Is my immune system getting stronger? Is it getting weaker? Are the Gods just crazy? Is a coke bottle going to fall on me from the sky?

I don’t know about you, but I am sick of constantly living with all of these unknowns and just being treated to merciless symptoms. Every answer to every question I ever ask anyone is just "It’s ME/CFS". I’m bloody sick of it!

Donate to my 40th Birthday Fundraiser for Ronald W, Davis PhD's research at Stanford to help find answers:

http://spot.fund/FindACureForMEcfs2023


I want to have gone into my doctor’s office at my college 19 years ago, when I felt like I had a fever, and I want to actually have had a fever, instead of a low temperature (that I still have to this day - 97.3 F usually) and get some blood work done, get the results, go back in and either get a prescription that would take care of my ailment, or see a specialist, get diagnosed with some condition and have them give me a bunch of those marvelous shiny color medical brochures full of smiling, free, happy people coping with their condition and information about how.

Or maybe one of those Cialis type commercials with the green fields and daisies and blue sky and the happy people flying kites and coping with their condition - "you can do this, there are answers and solutions to your condition because we as a society care about you and we have figured out answers and solutions to the best of our ability".

Where are the happy, smiling photo ops of people coping with ME/CFS? Still in relationships, still having sex, still playing with their kids and grandkids, still working their career? Still playing out in the sunshine? There aren’t any because no one has tried to help us find these coping methods or treatments. There are no significant treatments to help people cope with ME/CFS, we just keep stubbornly plodding along, often in complete misery. But hopeful

With ME/CFS, there are no images of managing or coping with the illness because there are no main stream, established ways of doing that. Because society does not give a shit to do anything about it, much less even try to find answers for us to live better lives even if not our best lives.

It would not take a cure for me to live a much much better life. A 2% increase in my health would result in something like a 2000% increase in my quality of life. Because I’m that sick, and getting a tiny bit better would mean being able to do something with my life. Something. It would let me, even if they are not my wildest dreams, find something to do with my time and my life. Instead of lying here dreaming of just being able to send an email or write something like this. (but I of course want a cure)

There have always been some groups of people that are exorcised from society out of fear. Racism has done it in the past, sexism has done it, religion has done it, homophobia has done it. Groups of people have faced the same prejudice that we face today. And they eventually won their freedom and their recognition by never giving up. I have written before that the ME/CFS community is in a similar place today as the queer community was in the 70’s or 80’s.

When people are scared of something, they don’t want to help, they just want it to go away and they ignore it, or worse. People are scared of ME/CFS partly because of the devastating symptoms but also because of all the unknowns and lack of any treatments. It’s terrifying. No one wants to think that something like this actually exists and could happen to them. Because it confronts the non spoken religion of the entire world that "good things happen to good people". And ME/CFS happens to good people. So they ignore us, don't invest in treatments and a cure, NIH comes up with ways to stall and ruin research (coming up with a bullshit reason not to fund the Nano Needle for example, which if it worked, would have completely changed the ME/CFS landscape forever - and they knew it).

But researchers are finding ways to work on the illness without NIH, and we don’t need a cure to be taken seriously, we just need proof that we exist, and that ME/CFS is real so that people can’t just judge us and ignore us. Irrefutable proof. Here we are, suffering, and we have been for a hundred years (or likely more). And you can’t just write us off anymore because here is the science that proves it is not our fault.

This is what I want. And then come the shiny brochures and the videos. Oh God how badly l want to see a commercial for a cure for ME/CFS with people living happy lives full of meaning and purpose, running, playing hugging, loving. How great would that be?

For any of this to happen however, our researchers need to get a foot in the door. They need to find something, a diagnostic tool, a real treatment, irrefutable proof. Something.

And for them to do that, until they find enough to get society to fund ME/CFS research, we are sadly the ones who need to invest in our own futures. I know, we have a lot of bills that insurance won’t cover and we are all broke, but we have to dig deep or this will just continue.

Please donate what you can to my 40th Birthday Fundraiser so we can invest in getting some of those shiny colored brochures, be taken seriously by the world, and get our lives back.

http://spot.fund/FindACureForMEcfs2023


Please dig deep. This is literally our only hope of getting our lives back. !00% of your donation goes to Ronald W. Davis’s research, where the best ME/CFS research in the world is happening.

I love you all. Cough, sneeze, hock, fart (woops).
Whitney  

ps. I’m writing this after getting meds, which right now lower my sensitivities for a short time and then they come creeping back and I soon can’t touch my phone or computer anymore for the rest of the day until I get meds again. It’s a horrible up and down every day...
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