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 making a heart shape with his hands.

ME/CFS Patients Deserve To Be Loved

ME/CFS patients deserve to be loved. We are worthy. We are whole people. We are not defined by sickness. We are not invalids. We are valids. We are whole, beautiful, wise, resilient human beings with more to offer than most healthy people. How many people have experienced what we have - the other side of this life - to know what it really means to be alive and appreciate every aspect of it.

I’m tired of feeling like I’m not worthy of being loved by another person. It’s not fair to myself and it hurts.

I have so much to offer another human being. The whole spectrum of human emotion together with tenderness, kindness, understanding, love, devotion, sacrifice.

I want to be in a relationship with a woman and feel that beautiful dance of reciprocated love where both people are opening their souls to each other, both people are honoring each other, respecting each other, praising each other and giving themselves to each other in all ways.

I want to run with a beautiful woman, hands held, through a field of daisies and fall together laughing only to find our eyes meet and both feel so much love at the same time. I want to feel it for her, and I want to feel her feel it for me. I want us to meet there in that space of complete vulnerability where we are both letting the other person in to the deepest halls of our souls. Opening those doors and taking a leap that those sacred grounds will be treated with reverence as we treat theirs with reverence.

And as those hallways are opened by both of us and we find safety in each other, a trust is found that is profound beyond words. We feel completely safe in every part of our body and soul with them. There is no part of either of us that isn’t accepted, understood and loved.

This is true love to me. And it is something I miss in ways I cannot express in words. The safety, warmth, support, comfort and simple beauty of true love is something truly sacred.

And ME/CFS patients deserve true love. No matter how sick we are, we are worthy of true love.

However, in my experience exploring love with ME/CFS, even mild ME/CFS, the physical limitations imposed on us by the illness impose limitations on what we can do with another person, which usually limits how we can connect with other people.

When I had mild ME/CFS, I had many mental symptoms and wasn’t myself and there was one woman I fell deeply in love with who didn’t see me through the illness and what it was doing to my mind. I was becoming sensitive to human presence, which caused symptoms that at the time I thought was social anxiety but now understand to be the illness getting worse.

When I had moderate ME/CFS, I was housebound, and I had a couple relationships during this time. I couldn’t go anywhere with them except for a couple times when i made exceptions and then paid the price dearly afterwards. I also could no longer sleep in the same bed as another person, as my sensitivity to human presence had gotten stronger. So they could never spend the night. This combination made it so the relationships just didn't work for very long because we weren’t able to connect deeply enough within these limitations. It also required a lot of sacrifice from them and their needs in a relationship. So they often decided they couldn't sacrifice that much anymore at some point.

When I was extremely severe, I couldn’t communicate in any way or tolerate the company of other people, so at that point even a limited relationship was impossible. I remembered past loves in my mind though, and so I did have a lot of love in my life even laying there still, alone in my room.

Now with slightly less severe ME/CFS after abilify made me a bit better, I am still open to love and have had a few experiences with relationships. I still can’t tolerate being in the same room with another person unless it is absolutely necessary. So my recent relationships have been all through chat. A chat only relationship is wonderful in many ways esspecially if you find an amazing person. True love is possible through the medium of chat. But I can’t see her face in person, I can’t read her body language, facial expressions, tiny movements when i say things that would allow me to read more into her reactions and her intentions and meaning behind the words. It’s just plain words. So it remains limited. I felt like I understood them deeply but there are some things them will never be able to understand through words alone. It is love, but the depth of our connection is limited by ME/CFS and my inability to be with them in person.

We deserve true love. And true love is possible even for the most severe cases of ME/CFS, even if it means retreating into your mind to find it. But it is also important for us to come to terms with the limitations we face and what is possible for us. I can’t meet someone in person and have that experience. I cant go running through the field of daisies with someone. I can’t even hold a hand. And it hurts not being able to do these things. It often feels unbearable.

But love is also one of the most beautiful parts of my life. So we have to be open to what is possible and try to accept our limitations with it as well. There is boundless love out there for all of us, but it will also come with painful limitations. But it is absolutely worth it.

Go for love. <3
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