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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Fear Of Death

It’s difficult to live so sick for so long with a disease that has so little known about it. I think it is inevitable that anyone sick enough with ME/CFS thinks about the possibility of death. For some I think it is something that becomes a serious fear.

I know I personally have felt like I was going to die - for months and years. But I don’t fear death anymore. I have prepared for it, come to terms with it and have perspective that gives me peace.

I recommend writing a WILL if or when you are able to, even if it’s not a formal notarized WILL. If you can tell someone you trust to carry out your wishes it will still help. This is not because you are planning to die but because you are preparing for it mentally. Knowing what would happen if you died provides great relief from some of the unknowns.

I have written instructions for how I want to be buried (for me - cremated and my ashes spread at the base of a beautiful old tree in the Sierra-Nevada Mountains). I have written that I want my body dealt with according to Buddhist tradition, with specific prayers. I have written who I want my belongings to go to. This makes me feel happy thinking of people I love getting things of mine that would mean something to them. I have written instructions for a wake of some sort (if there is one) with music I love and a few things I would like read. Most importantly I have a list of people who are to be told that I love them. This also brings me happiness and peace imaging them told this - that I remembered them, love them and thought to have them told so when I died, sometimes even after many years without contact.

It is also important to mentally come to terms with the possibility of death. This is more complicated and what it requires will vary from person to person. I can’t say anything specific for how to do this. But I personally feel that the universe is much more vast than this life and this body. I also know that we all die at some point. It is a part of life. This is something you need to navigate on your own but it is important to do the work of finding this acceptance. We all die at some point. It is a fruitless waste of energy to fear that which is inevitable.

I think what makes a lot of people fear death the most is having things in their life that are unfinished or left in disarray. This is especially pertinent to ME/CFS patients because most of our lives got abruptly stopped and are on hold with every aspect of life left unfinished. But there are still things you can do to tie up loose ends. It is important to make things right with people in your life to the extent that you feel you would like them to be if you were to die. And finish projects you have left uncompleted if you can or leave instructions for how to deal with the incomplete things in your life or what to do do with them. I have detailed instructions for what to do with unfinished creative projects of mine in my WILL.

The most important thing to overcome fear of death is having perspective on this life and what it means. This isn’t something I can tell you how to do either because we all come from different religious backgrounds and have different spiritual beliefs. But I can recommend to think long and hard about what death means to you and what it will be like. Preparing for it and having an idea of what to expect clears a lot of fear away. Fear thrives on unknowns. No one knows for sure what happens when we die, but you can still generate perspective about what you believe it will be like and how insignificant death is to make it feel less scary.

Western culture tells us we live forever and makes thinking about death out to be a morose activity. But in many cultures, death is thought about, celebrated and explored through education, ceremonies and festivities. It is actually very healthy to think about death, acknowledge it and have some kind of belief system that tells you what it will be like.

I follow the Buddhist path and believe in reincarnation. I believe my suffering in this life is a great purification of negative karma from the past (negative karma from past lives ripening now, so it won’t plague me in the future or in future lives) and part of my very long journey towards enlightenment. I have a feeling that this is where I am supposed to be right now. And I feel that death is a transition, not an end. I also have many ideas of what death will be like from Buddhist teachings. All of this helps bring me peace.

I do not want to die by any means I want to make that clear. I have so much more I want to do and could do in this life. But I’m happy with the life I have lived so far. I feel I have accomplished important things to me and have truly loved many amazing people. I am at peace with the possibility of death.

But I don’t want death, I will never give up fighting for life no matter the suffering I endure. I will never give up.