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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Processing Emotions With ME/CFS

Processing emotions with ME/CFS isn’t the same as it was when we were healthy nor is it the same for healthy people.

First of all, if we have anything other than mild ME/CFS, we are so restricted in our physical movement and range of travel that we can’t do things that healthy people do to gain perspective. We can’t go on a drive or a walk, which gives us fresh air, a look at different scenery, and gets blood moving through our body and brain and all our organs moving. Most of us can’t leave our homes or our rooms when something hurtful, tragic, or difficult happens to us. There is no way to momentarily escape what we’re feeling in order to remember who we are and what we normally feel like.

We also have brain fog to some degree or another, and this makes processing traumatic events challenging simply because we can’t think as clearly as we used to be able to or as well as a healthy person can. We feel the pain of whatever has happened, but our minds are not nearly as good at sifting through the cause and emotional result to work it out and find peace.

So with both of these combined, processing emotions from trauma or traumatic events is a challenge for us. The emotions that come from traumatic things that happen to us tend to just sit in us like rocks and we have a much harder time moving them through us and coming out the other side to peace and often being wiser for having done the processing to get to the other side, because next time that same kind of thing happens, if you’ve done the work to get through it, you have a pathway already established to get through it that you can follow and sort of channel the emotions through a canal you’ve dug into your mind.

In my experience, processing traumatic emotions with ME/CFS is like letting a poison work through me. I have less control over moving it than I used to or than I would if I was healthy and I kind of have to just watch and feel it slowly move through my mind and body at full force. This can feel like it’s never going away or going to work through me, but it does. It just takes time and patience to let the emotional poison find it’s own way through us since we can’t do as much work to force it out.

The thing is that I believe having to sit with and confront any traumatic emotion for a longer period of time without being able to escape or process it as well makes us really confront that feeling in a way that other people don’t have to. We can’t suck the poison out, and have no way of getting it to work through us faster, so we must sit with it inside of us for longer and experience it for longer and ultimately really face it and explore what it feels like. This gives us a lot of wisdom into the nature of this poison and forces us to dig these canals through our hearts and minds to channel the trauma out much more thoroughly and much more deeply.

So while processing emotions is a real challenge for ME/CFS patients, I think it’s good to remember how much we wind up learning from them. But there is no question that we can feel swallowed whole by them because there is no way out, and if they are powerful emotions, there is nothing else to to think about or do but feel them.

Just remember that they are only emotions, they do not define us. We are still the same people we were without these emotions. Remember that they are passing blue birds, they are not the sky. We will get through them, it will just take time and we have to trust in our bodies and minds to do the work more slowly, but we will do the work to get through it and return to a state of peace, at least from whatever has happened to us (we may still not be at peace holistically due to the nature of the suffering caused by ME/CFS, but we can be at peace from whatever trauma happened to us). No emotion can conquer us, no emotional wound can kill us, they are fleeting, they are visitors, and passers by. Watch them, examine them, and learn from them. It is always a painful process; Much more painful than if we had better tools at our disposal, but we can also see it as a learning opportunity.

Emotions do not define us, they are but passing visitors, sitting in us until we kick their busted assess out. As long as you can remember this, it will make the pain easier to endure, and you will feel less stuck and overwhelmed by whatever happened to you. It will still hurt, sometimes a lot, but if we can separate the trauma from our identity, we can make it through anything.



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