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.

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How I Loved Her

I loved her in a way that was unlike anyone I have ever loved before. I never knew love like this existed or was possible. And I have loved many incredible women very deeply. Women I feel so blessed to have met. Women who were born of the stars.

I have never really cared or thought much about marriage, but I loved her in a way that made me want to marry her and I would have married her in a moment without hesitation.

I pictured a selfish scenario where I was a bit healthier than I currently am so that I could be in someone’s life even if only in a small way (I currently cannot handle company so a marriage makes no sense). But if I could handle company and speak like many ME/CFS patients can, I dreamt of this selfish world where we were together and she loved me so much she didn’t care about the limitations and she made me aware of that and I didn’t feel bad about being her husband/partner. I dreamt of some symbiotic hypothetical that worked for both of us and filled us with love and support even if it was often very difficult and often quite sad due to the limitations imposed on us. But we loved each other so much that we would not have it any other way because anything was worth it to have each other in our lives. This was just something we had to accept about living in an imperfect world, but the love between us was unquestionable and undeniable and never-ending. She had so much respect for who I am that she was willing to put up with anything to be close to that. And I had so much respect for her that I trusted in her sacrifice to be with me and we were at peace with it.

I have loved deeply before, but the world has always come first for me, before any kind of love for a woman - my relationship with the world came before my relationships with women regardless of how much I loved them and wanted them to be in my life. And for this reason I have always had short relationships because I was young and moved a lot and when one of us moved, I prioritized moving and that change over girlfriends and I said goodbye. And I always felt a sense of peace with letting relationships be this passing thing that I didn’t need to hold onto, but rather experienced fully and then let go of. I saw a lot of beauty in that.

But being with her became the world I prioritized first above all else. There wasn’t me and the world and then her, there was a world with her. They became one and the same and I felt that being with her could be the most important thing in my life and the thing I always came back to. The thing I could always depend on being there and never questioned or doubted. The one thing that was always there in my life. No matter how nomadic I lived as an artist, photographer, photojournalist or documentarian. Or no matter how limited I was as a ME/CFS patient.

I had never felt that before and didn’t know I was capable of merging those two worlds. I didn’t know it was possible for me to have another person be the center of my world.

To be clear, another person could never be my reason for living like a lot of people say when they get married - "their other half" (I worked as a wedding photograph and heard a lot of "vows"). I don’t think that’s healthy or sustainable or even possible. I will never loose my independence or sense of self or merge my sense of self with another person. That scares me. I will always be Whitney and even with her, she would always be her. But my world would become in many ways about her. She would be at the center of my world instead of one of many things in my world.

I guess people say this a lot, but she would become my home. Anywhere and anytime and in whatever form she came to me in, she would be my home.

I loved her in a way where she became integrated with my own life and sense of purpose. I would have died to save her life or even for her happiness in a moment. Because she in herself was something I was happy to make any sacrifice for, even giving up my life. I would have done anything for her, given anything for her.

I’ve heard a lot of people talk about love like this, where it is the most important thing in their lives. But I’ve never felt it before. And it was all based on a chat only relationship in which I was bedridden and knew her only through words and a few images - images that were restrained - we made a decision to not show our whole bodies to each other because we wanted to save that for a real life intangible future that we both felt was destined to be.

The moment we met online we both instantly felt this sense that we were meant to be in each other’s lives even though it was not possible given the realities of both of our lives. I can only imagine what would have happened if we were both available and we could have acted on our emotions, possibly illogically.

She was the only woman I dreamt of, there was no one else. When I thought of intimacy, it was her that my thoughts went to, when I thought of love, it was her, when I thought of sex, it was her, when I thought of anything comforting or reminiscent of a home or life at home, it was her. And I didn't know how to stop that even after saying goodbye for good in a way that cannot be undone. I didn't know how I could switch that off, because she became my world and a big part of my reason for living and existing and she became so much of the meaning that I felt for my life.

I have felt love for other women I have met since meeting her because she has always been so unavailable we have not been able to dedicate ourselves to each other. But even still, it was always her. She played this interesting role in my mind where she was sort of "the woman". Like she had become part of my definition of the word and my definition of the idea. I couldn't separate the idea of a woman with her. They were not only connected but they became one and the same. Other women of course existed and I cared for them deeply, but they were all "other" women. She was the one.

I felt like this was the sort of feeling that was supposed to turn into marriage or long term partnership because I didn't know how you just turn off what had been turned on here; The kind sacrifices I would have made for her, what I would have done for her. I didnt know how I was going to live without her in my life, it seemed impossible. Even when I had to let go of the idea of a life together as I dreamed of, she was always there in my life in some way as a supporter, a friend, a lover, two hearts always entwined in some way and inseparable despite anything and everything.

I still love her so much, I just looked through all the pictures I have of her and when I close my eyes I can feel her presence so close to me but it’s an illusion. She is gone and I will never get to feel her next to me or talk to her or cook her a meal after a long day or look over at her as I shift gears with her sitting in the passenger seat looking at me with a little smile that says so much. She feels so close but she is far away and will never be a part of my life.

I’m grieving the loss of the most profound and unexpected love of my life. And I don’t have a great way to process that. Only time.

There are many incredible people I have met online who make me really happy and who I love and care deeply about. So I am supported and surrounded by loving, beautiful, caring people. I just need to let the loss work through me so I can let in something new.

Dealing with something like this with ME/CFS is so difficult. We don’t have the physical ability to do things that would help give us perspective, escape or reprieve, and we often can’t think clearly enough to process our emotions. So they sit in us like rocks. All we can do is keep going and know that we will be ok and that life holds so much for us in the future that we don’t know anything about yet. Life will find a way. The emotions will work through us at our own pace and we will deal with them and make peace with them. Our minds and bodies know how to process even if we don’t consciously do the work.

I will make peace with this. But it will not be an easy process.

Two weeks later:

I have been able to process things better with time. She did something incredibly hurtful that forced us to say goodbye to each other after everything and all of our dreams of a loving bond for the rest of our lives. I felt really betrayed at first, but I am internalizing what she did and this is allowing me to let go of the dream of us. The dream is still there, but it’s as if I have woken up from it. I still feel that it was a dream that I was supposed to live, but I have realigned my sights on a different future and accepted that reality.

So I loved with all my heart in a way that I did not know was possible. And I learned a lot about what was possible in a relationship and got a glimpse of how profound and important it could be. I can only imagine what is possible with unrestricted love. This did not work out mostly because of the realities of our lives but also because of the dynamics of chat friendships/relationships - something I want to write more about in another post. If I could go back, I wouldn’t change a thing. The time we spent together was magical and I learned a lot about the world and myself from being close to her. And I’ve also reached a place where I’m glad that it is over and I can move on and focus my attention on people and things that are more available to me in the way my life is now. I have no idea how I would make the energy for a relationship the way my health is, but I am open to the idea. I always remain as open minded as I can, we have to with all the limitations imposed on us by ME/CFS. We have to find the openings in the universe that let us live.

Think about how much I learned and changed and experienced from my time interacting through just chat with this woman. It changed my life. I would encourage all of you to be open minded to letting new love and friendship into your lives even with severe ME/CFS in whatever limited way they can exist in your life. Who knows what could happen or what is possible. The world is your decrepit little fucked up oyster.  

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