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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Expectations During The Holidays

Whatever we are celebrating during the holidays, many ME/CFS patients feel expectations from family, friends or loved ones to be a part of the celebrations in a way that we are too sick to be able to. This causes a lot of suffering and internal conflict.

Part of the reason for this suffering is that there is so little known about ME/CFS. This leads to us questioning ourselves constantly and often blaming ourselves for not "performing" better or being "more productive" because we don’t have enough medical information about our health to understand what is happening to us. So anyone questioning our limits or encouraging or expecting us to do more than we can feeds our own self doubt about the legitimacy of ME/CFS and it becomes incredibly difficult to think about our own real needs.

But ME/CFS is a real illness. Self doubt about our illness and our symptoms is natural given all the unknowns and is something we should all work on long term. It is a very important goal for all of us including myself to follow what we need and never doubt what we feel.

But for now, for this holiday season, remind yourself that ME/CFS is a real illness. Asking or expecting you to push yourself beyond your limits is no different than asking or expecting someone with lung cancer to smoke a cigarette. Yes, it is possible, but no one would ever ask or expect them to. It is the same with ME/CFS. No one should ask or expect us to push ourselves past our limits.

Aside from questioning the legitimacy of our own illness, the situation is further complicated by the illusion that we have a choice. It is possible to push ourselves past our limits and try to meet the desires and expectations of loved ones, just like it is possible for a lung cancer patient to smoke a cigarette to meet social expectations. But it is not really a choice. it makes us worse, possibly for months, or years. The people expecting us to push ourselves past our limits don’t understand the long term implications or the reality of the consequences. Both for us and for them.

If you push yourself to try to meet expectations now during the holidays and get worse, then ME/CFS will force you to do less and not meet those same expectations in the future. You can push yourself now, but then ME/CFS will simply force you to do less. It is much better to do less in the first place and maintain your ability to do as much as you can within your limits long term.

This is the pattern with pushing yourself and crashing. When you go over your limits you get worse and then your limits get lower and you can do less. Soon, what you could do if you pushed yourself is impossible and what was once possible within your limits requires pushing yourself. And if you keep pushing yourself, this cycle continues to make us worse and lower our limits until we stop and learn to live within them. To learn more about energy limits and crashing with ME/CFS, please read my blog post called   ‘Staying Below Energy Limits".

This pattern is true for both mild and severe patients. For mild patients, I know that pushing yourself feels ok to do because you feel like you bounce back, I had mild ME/CFS for years and truly understand. But the truth is that it makes you worse long term even if you don’t notice it immediately.

So hurting yourself to meet other’s expectations is a very short term solution that could very well mean seeing those people less in the future, whether you are severe, and will no longer be able to see them at all in the near future, or whether you have mild ME/CFS and it means heading further down a path towards seeing them less.

If we do not take care of ourselves, we cannot be there for anyone else. If we make ourselves worse trying to make other people happy, we will only get worse and be less present in their lives and less able to make them happy in the future. And we might even require more help from these same people in order to survive, which could totally change their lives.

Crashing is not a choice. We have a physical illness and crashing makes that illness worse and makes us less able to do the very things we are trying to do by crashing.

So listen to your body this Holiday Season and remember the millions of patients with ME/CFS in the world facing the same dilemma, use them as support to follow what your body needs. When you wonder if you are just not trying hard enough, think of the millions of ME/CFS patients out there who have the same health symptoms and the same energy limitations and are all wanting to do as much as they can and live as fully as they can. When a loved one expects you to do more than you are able to or doesn’t believe your illness or your symptoms are real, fall back on the ME/CFS community by picturing all of us reminding you that it is real. We are all here living with the same cruel illness and we are all real and we are all here for you.

Rejoice in what you are physically capable of doing and remember that the people asking or expecting you to do more simply do not understand ME/CFS. But we all do understand. Lean on this community to remember that ME/CFS is real and physical, and that crashing is not a choice.

I will be alone all day on Christmas and through the holidays and sending love to all of you to follow what your bodies need and prioritize your health. Not just for you, but for your loved ones as well. Because the healthier you are, the more you can safely be with them and support them without hurting yourself.

Join me in celebrating a crash free Holiday Season this year!

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