Best ways to donate to ME/CFS Research  

Stacks Image 49

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:
Stacks Image 58
Stacks Image 60
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.

Love,
Whitney  
Stacks Image 107
Stacks Image 5868
Stacks Image 5870
Subscribe to my blog
By subscribing to my blog you get my blog posts sent to your email address so you don't need social media to keep up with my posts. I only send my blog posts, nothing more and you can unsubscribe anytime. By subscribing you also get to read my posts before anyone else.
Stacks Image 4148
Stacks Image 6051
Stacks Image 6127
Stacks Image 6131
Stacks Image 6135
Stacks Image 6139
Stacks Image 6143
Stacks Image 6147
Stacks Image 6151
Stacks Image 6155
Stacks Image 6159
Stacks Image 6163
Stacks Image 6167
Stacks Image 6171
Illustration showing a family sat around a table on Thanksgiving with a ghost visible in the background.

Hungry Ghosts on Thanksgiving 2023

In Tibetan Buddhism, there are many realms of existence that we are not aware of in any way. But beyond that, there are millions of sentient beings in this realm that we cannot see or sense. They say that just waving your hand through the air kills thousands of beings. This is part of the realm we live in, called Samsara, which is imperfect and no matter how pure your intentions, you wind up killing, creating negative karma, and nothing is ever perfect or whole. It is an imperfect world.

This is part of why we ME/CFS patients get sick even though we are good people. Because we live in Samsara, where imperfection and suffering is part of life.

In one of the other realms, there are beings called "Hungry Ghosts". These beings are plagued by unquenched desire that is a thousand fold more than anything you have ever felt. Think back to one of the worst days of your life, or a day when you had not eaten in a long time and felt extreme desire filling your entire being. Hungry Ghosts feel this times a thousand, and they are never able to quench their desire or sense of need. If they do happen to come upon something like a glass of water, they cannot get to it. Or if they can get to it, it winds up being full of puss or mucus or poison. They can live in this form in this realm for thousands of years until they are reborn into a different existence.

I am not a Hungry Ghost, and will be the first to acknowledge that my suffering is nothing compared to what they experience, or what other beings in hellish realms experience. Or what some other humans in this realm experience.

But the description of the "Hungry Ghost" fits my life really well in a more vague metaphoric sense. I have recurring dreams where I am hungry and am surrounded by food like at a grocery store, I can put things in my cart and debate which cereal to buy for hours, but there are always obstacles getting in my way of actually eating the food. I never, not once in these dreams, have actually gotten to eat. Something always stops me and the dream ends before I can cook or eat.

And in the rest of my life, in a broad way, especially right now, I really feel like a Hungry Ghost. I am surrounded by accessible, healthy, pure, delicious food I cannot eat, clean water, exotic fruit and vegetable juices of all kinds, but my stomach won’t let me consume any of it. I am fed by tubes and my mouth is always dry. I am surrounded by creative projects that are just sitting there waiting for me because I am too sick to work on them. These are projects that I am extremely passionate about and love, but cannot even touch. There are multiple career paths waiting for me that I cannot pursue. There are loved ones and friends out there I will never meet. There is a world full of fresh air and sunshine and open fields and forests and LIFE that I cannot be a part of. I am surrounded by a world of possibility and in many ways privilege, that ME/CFS keeps me from. On my worst days, l cannot even touch any of the things around me and I must lay here full of desire for engagement with the wold, but unable to interact with anything around me. Stuck in my mind and full of desire for the feeling of life flowing through me.

On Thanksgiving this year, I will be like a Hungry Ghost, hovering above the table, wishing I could eat a plate of the delicious food, drink wine, talk to my family, laugh with my family, feel that connection to other people. But I will be alone, likely sleeping due to my current schedule, fed by tubes.

We all feel like Hungry Ghosts, but especially on holidays because our desire to be a part of the world is so much higher than usual and yet our limitations are the same.

All we an do is accept that we are "Hungry Ghosts" (as a metaphor) and cannot be a part of the world the way we would like to be. We will suffer and be full of unquenched desire on Thanksgiving no matter what we do.

If we push ourselves over our limits, we will just wind up dull with brain fog, and won’t be able to be our true selves and thus remain disconnected from that connection to family/friends/love/life that we so desperately desire. And then we will get worse from pushing ourselves and that world will become even more unaccessible and further away.

If we refrain from pushing ourselves for a fleeting one time experience, and stay within our energy limits, we will lay here thinking about what could be, full of desire for LIFE in all its glory.

There is no way around it, no matter what you do. But the obvious choice is to stay within your limits this Thanksgiving since pushing yourself will accomplish nothing anyways -you will still wind up full of sadness, pain, longing and desire for the life that you simply cannot have.

I will be ignoring Thanksgiving as much as possible this year physically, but internally I will be sobbing for the life that I cannot have. I will not meet my Nephew Bennet for the first time or see my amazing Niece Amalia. I will not let anyone in to my room to say "hi" briefly. I will lay here dreaming of life and just feeling sad.

The truth is that holidays are sad days for ME/CFS patients, and nothing we do will change that. We have no choice but to wind up feeling like "Hungry Ghosts", full of desire that cannot be quenched.

But we do have the choice not to hurt ourselves trying to have what we cannot have.

Join me this Thanksgiving in living the Crash Free Lifestyle and stay within your energy limits, knowing that even if you push yourself beyond them, it will not bring you what you physically cannot have. Thanksgiving will be a sad day for all Americans with ME/CFS. We might as well not hurt ourselves in addition to the emotional devastation.

I know it’s not easy, but you can do it.

Hungry Ghosts together.

Love,
Whitney  

ps. Please donate to my 40th Birthday Fundraiser to buy Ronald W, Davis some instruments he badly needs to find answers to ME/CFS. The sooner Ron can figure out ME/CFS, the sooner we can live a Thanksgiving to the fullest, surrounded by friends and loved ones.

http://spot.fund/FindACureForMEcfs2023

NIH won’t help us, but we can help ourselves. Please share my fundraiser and donate what you can today. Thank you!
Subscribe  
to get my newest blog post sent to your email address
Only blog posts, nothing else. Unsubscribe anytime.