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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25-08-27_Remembering_What_Real_Life_Is_Like-me-cfs

Remembering What Real Life Is Like

Accessibility:   Listen to this post


   

Listen to this post on my podcast                

My Jtube broke finally and I have to go to the hospital tomorrow and I’m feeling stressed. (Jtubes always break, it’s just a matter of time and I’m writing this last night). For 13 years my life has been a planned, predictable routine. Everyday. And this is such a huge departure from that. I'll take Ativan and get Fentanyl during the procedure and both will help protect me from my illness worsening. And I am very lucky to get to go to a wonderful hospital that is full of caring, understanding people who actually all remember me from previous visits. I will still have a minor crash but probably be ok after a week or two recovering. But that’s not what makes me stressed.

It's such a deviation from my routine, and that is so stressful. You learn very quickly when you have ME/CFS that unknown situations are like minefields and you avoid them like the plague. Because unknown situations equal unknown energy use. And we of course need to stay below a certain amount of energy use. But these unknowns are so normal. It’s so sad to be so estranged from such normal definitions of being alive. I mean I haven't been outside, seen the sky, or breathed fresh air, or felt the sun on me, or watched - without window glass between me - the beautiful way leaves move gently in a breeze. Or anything real-regular-life like that in a year since my last trip to the hospital.

And I’ll not only be outside, but I’ll also see healthy people wasting energy, bubbling and bouncing around in a way that looks to me like a hoard of rabid ants, chattering away, literally just throwing energy away like it is worthless. Because to them, it is worthless - it has no value because they have rather limitless energy and even in the weakest, sickest moments of their entire lives, they have never experienced the energy limitations ME/CFS imposes on a person.

And I will be exposed to that healthy world where everyone feels fine and has plans for the future and goals and a full life. Where they live a full day and go to sleep knowing tomorrow will be another full day of work and play and love and fresh air and sun and endless surprise unknowns of all sorts.

I will watch people talking endlessly, acting on every impulse without a thought. Meanwhile, I think about every single action before doing it. Mine is a completely pre meditated life. Out there, it's just impulse-bam-action. No questioning, pondering, wondering: will it hurt me, is it worth the harm, should I use my energy on this or save it for that, etc.

The nurses all around the hospital constantly say things like "ah ha ha ha ha yeah did you see that show last night?"

And my life is like "can I watch the show, will it make me worse, can I even follow it mentally right now? Then, if I do watch the show, can I talk to someone about it? And if I do, should I just chat with a friend about it online? Can I handle someone in my room for 5 minutes and if I do should I use that time to talk about a TV show? And if I do, can I laugh with them or will that use too much energy? Should I hold back and save that laughing energy for later? I could go on, but you know the drill. I have a thousand thoughts about every little movement and action that healthy people just do without even realizing it, much less thinking about it.

I honestly don't know if I would prefer seeing the real world once a year or just letting that world fade into the back of my mind - not forgetting it, but not having it shoved in my face like tomorrow. And making the best out of what my life is like and what exists within the walls of my world.

It is so hard seeing the real world and really feeling it and then coming back to my room and closing all the doors. I literally watch the top frame of my door move over me as I get wheeled back into my room and the sky disappears over the roof.

The spontaneity that healthy people show so clearly is at once a refreshing reminder of what life is supposed to be like, but also a shocking and profoundly sad reminder of what my life is like.

My heart goes out to all of you trapped inside walls of routine, pre meditated life, lack of spontaneity, necessary control over everything around you, endless thought and questioning before every action and then often regret (or sadly, self blame) afterwards when we make the wrong decision and it hurts us and makes us sicker. This is not how any sentient being is supposed to live.

Love,
Whitney  

PS. By the time you read this, I’ll be at the hospital, from 12pm to likely 6pm Pacific USA time. Wish me luck staring down the healthy weirdos!
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Tags: ME/CFS Awareness Day

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