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.

Love,
Whitney  
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My 40th Birthday Fundraiser!

I’m 40 years old! I’m doing another fundraiser for my birthday and I want to help Ronald W. Davis buy some instruments he needs for his lab that will accelerate his research and further unleash his brilliant mind. The fundraiser is live on Spotfund now:

  http://spot.fund/FindACureForMEcfs2023

Getting older with ME/CFS is so hard. I’m heartbroken thinking about laying here in a 40 year old body and all the precious time I have lost. Can you all give as much as you are able to for Ron’s research and share this fundraiser as far and wide as you can to both celebrate and mourn my 40th birthday? And please- like, comment and share this post because all 3 of those get the social media platforms to show this post to more people which means more donations.   

100% of the donations go directly to Ron’s research.

  http://spot.fund/FindACureForMEcfs2023

I still feel like I’m 25, the age when I got severely sick. And suddenly in 10 years I will be 50 and people can call me a "senior citizen"! I don’t ever pay much attention to birthdays but turning 40 has real meaning and I’ve been thinking a lot about the loss of so much of my life and what I would have done with it. I’m not someone who would have spent my life working as a corporate stooge pushing pencils (there’s nothing wrong with that, no offense it’s just not me), I would have dedicated my life, even sacrificed my life creating projects that helped make the world a better, more beautiful place. I have a unique vision for photography and film that could really shape the world. And it’s so sad to be this trapped not only in my room but also in my own body and mind and not be able to contribute to the world in the way I know I am capable of.

Turning 40 isn’t really much older than 39, but I am not a 40 year old man inside! And it's getting to the point where I don’t have time to do the things I was born to do, even if I was cured tomorrow. I have so much living to do, so little life in this body and so little life left to live.

This is compounded this year by getting worse 5 months ago. I never thought I would loose the ability to communicate AGAIN but this birthday I’m so sick I have been unable to type or use my phone or computer at all for months (except for a few nights of med induced adrenaline recently that allowed me to publish the updated ME/CFS website I built just before I got too sick to use my computer) and it’s getting more and more difficult to pantomime to my caregivers in person, I’m starting to crash a lot just trying to get my basic needs met. I crashed today trying to get a new pair of boxers to change into and again because my poor mother simply said "see you later" while walking out the door after I gestured that I had reached my limit and needed to stop trying to communicate with her and be alone. Just hearing a few more words made me crash. And then I crashed about 15 more times just thinking of her saying that and the fear and stress of it happening again. I feel so repressed I spend all day in a state of panic, silently screaming to let my soul out of this prison. I feel so trapped and so alone.

Can you please share this fundraiser and give as much as you can this year so we can stop more young people from getting old lying in bed alone in dark rooms unable to do what they were born to do, watching their dreams die before their eyes? We have to stop this illness. And right now, you are our best hope at doing that.

  http://spot.fund/FindACureForMEcfs2023

Until we hit a milestone with research that puts ME/CFS on the world stage and forces research funding and real acknowledgement, we are the only ones who truly understand and will donate to make this research happen.

Ron really needs 2 devices this year that will cost a total of $52,000, and if we can all dig deep and spread the word, there is a 3rd device he also needs and I can raise our goal and we can try to get him that as well. All 3 devices allow him to look more deeply into our bodies to find what is happening to cause ME/CFS, and to do it all much faster. His ideas are so far ahead of what he is able to actually do because he doesn’t have the funding. Someday the world will care, and will donate to ME/CFS research, but for now it depends on us.

  http://spot.fund/FindACureForMEcfs2023

Let’s get him all 3 of those instruments! And for my 40th birthday this year I say "Good Riddance to ME/CFS!" I only have one finger for you, you %$^ #$ % #&$#!.

I love you all, and miss writing to you so much. I will never stop fighting for freedom, life, and justice for all of you.

Love,
Whitney  
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