Whitney Dafoe
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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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Truly Love Yourself Over The Holidays

You know what this time of year means.

) Increased expectations from everyone we love and care about.

Even if they understand ME/CFS the best they can, they will still internally want us to be with them and participate more than we are able to physically and we can feel this from every single person who is around the house we live in this time of year.

"I wish I could just hug him/her/them; I wish I could just spend a few minutes with him/her/them in silence; I wish I could just have a conversation with him/her/them; I wish he/her/they could just come in for a few minutes to be with us; etc"

) Increased desire to be with everyone we love and care about.

We want to be with our loved ones more than any other time of the year.

"If I could just spend 5 minutes with my family in the living room on The Holidays it would make me so happy and it would be worth feeling worse afterwards; I need to be with my family during The Holidays, I’m so lonely, I need to feel the love and company of The Holidays with my family to keep me going; My soul needs feeding too, not just my body, I need to feed my soul with the love of my family or I won’t make it or be able to continue; I simply cannot continue this life without spending more time with my loved ones this year, I can’t do it; etc"

) Poor judgement about the consequences of doing too much because we want to do more so badly that our mind plays tricks on us.

"Maybe it won’t be as bad this time, it’s The Holidays, I’ll get adrenaline and it will cover me and hopefully my crash won’t be as bad this time; Maybe I’m better this year and pushing myself won’t make me crash for months like last year" etc

) Increased judgment and misunderstanding from everyone we love and care about.

Anyone who judges us even silently will judge us more during the Holidays when people are expected to make sacrifices to be with their loved ones and give back to their loved ones. But for healthy people, a sacrifice is temporary, for us it can have long term or permanent/indefinite consequences.

"I wish he/she/they would try harder to be with us instead of just focussing on his/her/their illness all the time - there’s more to life than illness!; I wish he/she/they would get over it and learn to live normally, we all get tired, but I push through and I am there for my family; He/She/They is not really sick, they are just lazy, they need to get psychiatric help." etc

We can’t give in to any of this during the Holidays. It’s the devil on our shoulder whispering sweet nothings or taunting us with guilt, and we need to flick that little fucker off our shoulder and look inward and do what is best for our health, no matter what people expect from us, no matter what we want, no matter what kind of delusional rationalizations of crashing being ok come to us, no matter what people think or how they judge us.

We need to remember that if we crash and get worse, we will have a reduced ability to spend time with our loved ones for an unknown amount of time after The Holidays and it could be permanent or indefinite. We could get worse for years because of trying to have an hour of "soul time" on The Holidays with loved ones, and then we will be that much more removed from their lives for all that time afterwards.

A short lived experience is not worth it for these reasons:

) We will get exhausted very quickly when we push ourselves and get brain fog and we won’t be ourselves with our loved ones so they wont really get to be with our true selves anyways. They will be spending time with a dulled, less present, less feeling, less thinking version of ourselves.

) This brain fog will also make it so that the experience is not fulfilling in the way we want it to be because we won’t be able to process any of it, our senses will all get dulled and we won’t feel the loving connection to our loved ones that we are craving. We will also forget the most precious moments so in the end we will just wind up with a dulled, unfulfilling experience that we cannot remember very well. Not worth it.

) Getting worse indefinitely after The Holidays means an unknown number of days of less contact with loved ones. And this could be a permanent change. It is better to have what you are able to have than try to push yourself for a very short lived experience and then live a lesser life afterwards for an unkown amount of time.

) Ultimately, we cannot be there for our loved ones unless we are there for ourselves, we have to take care of ouselves before we can be there for our loved ones. Truly loving people requires being our best selves, and that means not sacrificing our health for something short term. And being truly loved by someone else means that they want us to be our best selves to they can experience being with us in as real and genuine a way as possible and being as close to us as much as possible. That means prioritizing our health so we can do that for ourselves and for the ones we love.

Let’s all go for real, genuine love this Holiday season. Take care of yourself first, prioritize your own health above your desires, above the expectations of others and above the judgments of others. Because that is how you can ultimately love the people in your life the best and give them the most of yourself.

I will be alone this Christmas doing my normal routine and avoiding a crash so I can try to continue to improve my health. Join me for a crash free Christmas this year. It will not be easy, it may be quite sad or in fact devastating, but it is the best way to truly love yourself and to give true love to those around you. Sometimes less is more. And sometimes true love is not what it looks like on a hallmark card or in the movies. Follow your own heart and soul this Holiday season with me and live the path that truly loves yourself and the ones you love.

Love,
Whitney  

ps. I wrote this over a period of many days to avoid getting worse.
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