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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A Book Has Been Written About Ron and Myself

I’m excited to announce that a book has been written about my family (mostly about Ron and myself) by a great author, Tracie White, and published by a major publishing company. In the US and Australia it’s called "The Puzzle Solver". The UK Publisher named it "Waiting for Superman". (I’m not sure about other countries but it will be available worldwide). It tells my life story as well as my father’s and intertwines that with my current fight to survive and Ron’s fight to find a cure for ME/CFS before its too late for me (and many of you).

waiting_for_superman_tracie_white

When I first heard of the book while on Ativan at the hospital I quickly realized how important this was and what a unique opportunity it was. I went into adrenaline mode and began what would be a long and strenuous sacrifice to communicate to her as much as I possibly could about my life, my experience with ME/CFS and what the landscape was like for ME/CFS patients; what we go through, how all the various government and societal systems have treated us throughout the last four decades, how much we truly suffer, the fact that the true reality of the horror of severe ME/CFS is way worse than anyone including the ME/CFS community realizes (homelessness, dying on the streets, not identified as ME/CFS related deaths because they were never diagnosed, etc). I truly hope I did all of you justice. I did my best, even prioritizing communicating to Tracie over my doctors. I always kept her here as long as she could stay, before she had to leave for the sake of her safety driving a dangerous mountain road to get home. She made an incredible effort to always be here when I was on Ativan and she deserves accolades from this community for her effort.

This is a huge opportunity to break through the wall of ignorance that has kept us in the shadows of prejudice for decades by finally reaching the general public with the truth about ME/CFS. We are all hoping it will be a bestseller and the publisher thinks it will be. But in order for it to have a chance at that, it needs to sell a lot of pre-orders. The more pre-orders that sell the more copies they print, which in turn affects how the New York Times looks at the book, or if they do.

We need this to be a bestseller.

So I’m going to ask all of you, even if you can’t read right now, to pre-order a physical copy of the book. And tell everyone you possibly can to also pre-order a physical copy. Spread the word to everyone you know and your whole social network. This is so important.

The public becoming aware of the truth about this illness is the best possible way to pressure NIH and other countries to increase the budget for ME/CFS research to appropriate levels. This is is a real chance at the hundreds of millions of dollars of research funding that we all deserve.

So pre-order a copy today and spread the word!

The best way to pre-order it is through an independent local bookstore. But more important is to just preorder it wherever you can. A physical paper copy is best but anything is better than nothing. Here are some links in various countries.

USA link:
Books Inc, an independent San Francisco based bookstore is a great place to pre-order. Tracie used to visit there while coming to see me and likes to recommend this store.

https://www.booksinc.net/book/9780316492508

Also Amazon is fine

https://www.amazon.com/Puzzle-Solver-Scientists-Desperate-Illness/dp/0316492507

Canada link:
https://www.amazon.ca/Puzzle-Solver-Scientists-Desperate-Illness/dp/0316492507

https://www.chapters.indigo.ca/en-ca/books/the-puzzle-solver-a-scientists/9780316492508-item.html

UK link:
https://www.waterstones.com/book/waiting-for-superman/tracie-white/9781911630616

Australia link:
https://www.dymocks.com.au/book/the-puzzle-solver-by-tracie-white-and-ronald-w-davis-9781760875695

https://www.booktopia.com.au/the-puzzle-solver-tracie-white/book/9781760875695.html

https://www.hachettebooks.com/titles/tracie-white/the-puzzle-solver/9781549177545/

https://www.amazon.com.au/Puzzle-Solver-Scientists-Desperate-Illness-ebook/dp/B08KRHLX79

EU link:
https://www.amazon.com/Puzzle-Solver-Scientists-Desperate-Illness/dp/0316492507

How to buy products on Amazon from European countries:

https://borderoo.com/pages/how-to-get-amazon-shipped-to-europe/

If this doesn’t work, Waterstones in the UK ships internationally. But it would be better to pre-order “The Puzzle Solver” version from Amazon or elsewhere if you can.

https://www.waterstones.com/book/waiting-for-superman/tracie-white/9781911630616

Finland, Norway and Sweden Link:
https://www.adlibris.com/fi/kirja/the-puzzle-solver-a-scientists-desperate-quest-to-cure-the-illness-that-stole-his-son-9781549162541?fbclid=IwAR1iyBhNsb9pJcdC-hsrMPj0F4tJdeBNU9c3Q0Ociy4nqTCE_irQUTeTGI4

The Netherlands link:
https://www.bol.com/nl/p/the-puzzle-solver/9300000002148511/

India link:
https://www.amazon.in/Waiting-Superman-Familys-Struggle-Syndrome-ebook/dp/B08G6FM7S6


You can also request that your local library purchase the book which would allow us to pre-order way more copies.

You'll need this information for them:
The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son (Hardcover)
By Tracie White, Ronald W. Davis, PhD (With)
ISBN: 9780316492508
ISBN-10: 0316492507
Publisher: Hachette Books
Publication Date: January 5th, 2021
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