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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A Letter to a Friend

I wrote this letter to a friend who I had to stop talking to due to the usual prejudice and lack of understanding about ME/CFS. I did not send it. I just didn’t see the point in putting this out in the world when I wasn’t going to be a part of his life anymore anyways.

The final nail in the coffin for us was a phone conversation where he invited me to a party in San Francisco (I was living in Berkeley just across the bay) and I told him the driving plus a party were too much for me that day. He proceeded to lecture me for about an hour about how sometimes you have to push yourself to keep your mind healthy by getting out to things like parties sometimes. What he didn’t understand was that I was already pushing myself but you have to prioritize when you have ME/CFS and I chose other things like continuing to make art instead of going to parties, which I wasn’t all that into even when I had the energy. I didn’t talk to him anymore after that phone call. But it was a long time coming. A lot of similar remarks and subtle judgements like that all the time.

I contacted him later after not talking to him for a long time because I was at the time housebound living with my parents and trying to help setup the Chronic Fatigue Syndrome Research Center at Stanford (CFSRC) and he was the best logo/design artist and web designer I knew so I decided to swallow my pride and reach out to him anyways. That’s why it talks about reaching out again in the email to him. He turned down the request for help, calling it a personal project and comparing it to another friend’s music website. That’s how seriously he took this illness. The CFRC has the potential to help millions of people in this country alone and he gave that no credence. He also accused me of having a "defeatist" attitude while trying to explain the phone conversation we had last time we talked. I definitely decided not to communicate with him anymore after that.

I realized that just putting the words on "paper" was enough and was therapeutic. And I thought it could be therapeutic for many of you in the same way, reading a letter to someone who treated me the same way many of your friends/family treated you before you were forced to cut them out of your life (or if you are sadly dependent on them, put up with it)

This email is emotional and a bit angry. Viewers who are sensitive to that should use discretion when deciding whether to read it. Blanks spaces are used instead of his name.


Unbelievable _________. You're a smart guy clearly. And you have moments of real kindness and compassion, which I used to really like. But you can also be arrogant and judgmental, which leads to you passing quick judgement on things you have no understanding of. This is something I've been way too accepting of and quiet about for too long.

You have never even tried to understand my situation. You could never know how I have reacted to this illness because you have no idea what I'm up against. You don't even know anything about ME/CFS. And no, a fucking wikipedia search isn't going to cut it here. Ignorance, combined with your arrogant and a judgmental mentality is a bad combination. You're like a guy sitting at home watching TV, and you see a news broadcast of someone walking slowly, and you just yell out "lazy", but what you don't see on that little screen is the 60mph wind that person is walking against.

The truth is that you think if you were in my shoes, you wouldn't be sick because you think you know how to live better than I do. Now it might be true that you wouldn't be sick in my shoes but that's because you never would have done any of the traveling I have done in the way I did it, which is why I got sick. You'd be here, safe in your carefully crafted isolated little world. I took a risk, to be out in the world in an extraordinary way. You stayed at home and played it safe. The reason I am sick is because I am the opposite of your accusations. If anything, you are the one who needs to get out more and stop keeping yourself deluded by controlling your surroundings.

Was all that traveling defeatist? Living in a small village in Jamaica, or in the rainforest with a Shaman's family, or going to India in spite of being sick, because I was doing what I wanted to do and not letting it get in the way of my dreams and goals? Or putting off school to stay in India and study Buddhist philosophy? Or staying in India for 3 months after I got sick, deathly ill, because I wanted to stay for a year and had big plans and didn't want to come home? Or how about starting a wedding photography business when I was too sick to hold a full time job, because I tried to make the best of my situation by using it as a chance to work towards a dream job. Turning a shitty situation into an opportunity. And pushing myself harder to do that than you ever have in your life. I was sick as a dog by the time I got my car loaded in the morning and the rest was will power alone, for 16 hours straight. And incredibly bad for my health. But I DID IT ANYWAYS because I fight for my dreams. I have continued to get sicker in part because I refuse to rest as much as I should, because I am optomistic and because I push myself.

How about seeing every single doctor in every single area of medicine for 8 years looking for a diagnosis? Real defeatist huh? I could make a long list of the reasons your accusations are ignorant but I'm not going to take more time. You don't deserve it.

You have no idea what I have been through or how hard I have tried to wait out, overcome, and make the best of a devastating illness that has slowly made all of my dreams more and more difficult to achieve. It is vile that you would make such simple minded judgements about me and my life.

Rather than be an actual friend, you just told me that because I wasn't going out to parties as much as you thought I should I was being "defeatist". You made quick assumptions about what would be good for me, and then judged me based on whether I did that or not. And you said this with no understanding or knowledge of the reasons for my decisions and actions, my condition, or ME/CFS. Little do you know that pushing past the energy limits that patients with ME/CFS
develop is the absolute worst thing we can do. It's what makes people get worse, and why some people wind up bedridden for decades.

It's unsupportive judgmental pricks like you that make it much more difficult for people with this, and many other serious illnesses, to survive. People like you who would rather make quick, easy judgments to reinforce your own cozy delusions about the world than stop for one second and put yourself in another's shoes and make even a tiny effort to understand.

I knew my email reaching out to you for help was a mistake. But this is an important project that could benefit millions of people [The Chronic Fatigue Syndrome Research Center at Stanford] and I decided to put my own interests aside. Well, you've shown that you have not changed.

Good luck __________. Do not respond.