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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Preparing For The Worst

It’s been since 2013 or 10 years since I have spoken, eaten a crumb of food or a drop of water or left my bed. From 2013 to 2020 (7 years) I could not use my phone or computer at all and had to come up with various creative ways to communicate like using pre-written note cards with messages written on both sides of them that were commonly used like "no/yes" "more/less" "please put this here/please do not put this here", "This made me crash" etc and I would often use multiple note cards put together to form broken sentences to communicate. I wound up with several stacks of them that I would flip though to try and desperately communicate things.

And I also tried using Scrabble tiles for a time when I became sensitive to hand writing- I lost the ability to write long before, but then I lost the ability to tolerate even seeing handwriting as well. I would use the scrabble tiles to spell out sentences painfully slow but it worked for a time.

Then there was a time when I could not tolerate seeing any form of written word or communicate in any way. No note cards or scrabble tiles or words of any kind anywhere, my stress response became sensitive to all writing of any kind. My system would panic at the sight of letters and immediately crash. The thing about writing is that you can’t avoid reading it when you see it, your brain automatically reads any text you see. And my brain did not have the energy to process any reading at all.

The only thing I came up with to communicate was to use paper towels because they were there by my bed for cleaning, not for communication. So I sort of cheated my own stress response (I tried to do this as much as I could in various aspects of my life - trick my stress response) and I would either put a wadded up paper towel on something I needed help with and then wait for my parents to figure out what it was, which often took hours and trip after trip into my room, each trip making me worse. I would also fold up the paper towels into an arrow and point it in a direction or at something I needed help with and hope they would figure it out.

It’s very interesting to me how I became sensitized to any kind of communication but I could get away with some communication by using an object that was not designed for communication; Paper towels.

The worst part of all of this is that even days before getting worse, I could easily have written all the cards I needed to communicate, or setup a plan with my caregivers. But I was always one step behind my energy levels and severity. By the time I got worse and realized what I now needed, I was too sick to make or plan for what i needed.

So I want to encourage all of you to prepare for the worst. This is not to be confused with expecting the worst. We all expect the best, and this is why I did not plan for the worst, and most of you probably do not either, because you’re expecting the best, you’re hoping and dreaming of getting better, not worse, so all your thoughts go into what you would do if you got better, not what it would be like to get wore. And this is good. Keep expecting, praying, wishing for, and thinking about getting better and imagining yourself better. But just in case, have a plan for what you would do if you get worse.

I would advise anyone who is close to not being able to type on a phone or handwrite anymore to make note cards asap. Think of all the generic things you might want to communicate in your life and write opposites on either side of the card. "yes/no". "i don’t know/I know", "Put it here/Don’t put it here", "Do it like this/Don’t do it like this", "What you just did made me crash/What you just did did NOT make me crash" (this is one of the most important ones so your caregivers know when and how they are hurting you, one of the worst things about not being able to communicate is not being able to tell the people around you when they are hurting you, it turns into an unwitting abusive situation). If you make enough of these, you can wind up with a stack that allows you to get your most basic needs met, and then just keep them in case. Because not being able to communicate in any way with severe ME/CFS is the worst experience of my life. And I want you all to hopefully avoid the terrible trauma of that experience.

There are other things you can do to prepare too, but it will vary based on your symptoms and your living situation. Try to be one step ahead of ME/CFS instead of one step behind it. Prepare for what life would be like if you got a bit worse, so that if you do, you have a plan in place. Think about anything that is extremely difficult or borderline possible for you right now because that is what you will lose if you get worse, and trust me, ME/CFS has no boundaries or limits. You can lose whatever it is. So think creatively about how you could get those difficult or borderline possible things done in an easier way. Think about how you could do them in a way that does not trigger you, by using a different material, a different method, or whatever you can come up with. And talk to your caregivers and have a plan in place in case you lose those things or abilities. Do it now while you can instead of winding up needing basic necessities and not being able to get them without hurting yourself.

Plan for the worst but always hope for the best. Wish for the best. Pray for the best. Imagine yourself flying above the wreckage of your current life.

Love,
Whitney 
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