Whitney Dafoe
/
SHOW THUMBNAILS

  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
Blog Archives
Index

Year / Month
24-10-07_MECFS_Olympics

ME/CFS Olympics

Accessibility
         Listen to this post read aloud


   

Listen to this post on my podcast                

It says a lot about the unique and widely misunderstood challenges that ME/CFS and Long Covid patients face that there could not be an ME/CFS Olympics. Because if we tried to compete and push the physical limits of our bodies like that, all the winners would simply be dead. I’m not sure there are other conditions quite like that. Where there is absolutely no way to push the limits of the physical confines of an illness. Where there is no way to "will yourself to overcome the odds" or "power through" or "be strong [and do it anyways]" or anything like that; Where the physical limitations imposed by the illness are the same whether you were previously a triathlon or a couch bum; Where no amount of "trying" or "willing" or "pushing" can make your quality of life better; Where "YOLO" would literally end your "one" life.

With ME/CFS/Long Covid, pushing yourself just makes you worse endlessly until you would at some point die. ME/CFS/Long Covid is like having a severe allergic reaction to overexertion (pushing yourself past your energy limits). Doctors, family, friends, carers and the general public really need to understand this unique challenge that ME/CFS patients face until our inability to push ourselves past our limits is accepted, understood and supported the same way a peanut allergy is.

I want the stewards on airplanes to have un-foldable beds ready for ME/CFS/Long Covid patients who wind up with a severe overexertion reaction, just like they have Epipens ready for severe airline peanut allergic reactions. The dangers posed by serving peanuts to those with peanut allergies is the same as the dangers posed by a highly stimulating and uncontrollable environment that requires sitting up for long periods of time for ME/CFS and Long Covid patients.

If there was one thing I could will the world into understanding about ME/CFS/Long Covid, it would be this. Because out of all the challenges we face, not understanding our inability to push ourselves causes the most unnecessary inflicted suffering upon us.

Most doctors think that ME/CFS/Long Covid patients could feel better if they tried harder and this leads to widespread neglect, abuse and mistreatment to millions of people all over the world. If doctors truly understood that no amount of trying could make us feel or function any better, they would "do less harm" (or maybe someday "no harm", as they have sworn in the hippocratic oath they all took) by accommodating our needs rather than constantly expecting us to overcome our needs. And they would not sit by and wait for us to "get over" urgent routine medical conditions because they would not expect us to be able to will ourselves out of them. Just as they do not expect anyone who has any other illness to will themselves out of a physical medical condition. You don’t see pamphlets about "positive vibes" at Oncology offices. You see pamphlets about physical challenges and real, physical solutions.

If caregivers understood that "pushing ourselves" made us worse, they would be able to care for us in a much better way that would not only help us be healthier but help us actually be able to do more without making our illness worse. When caregivers expect ME/CFS and Long Covid patients to simply "push ourselves to do more", we often wind up in a "rolling crash" that leads to a needless state of never ending degeneration. Caregivers need to understand what our energy limits are, and help us or take care of us in a way that lets us stay below them. If there was any basic way of defining the job of caregiver, it would be to care for a person so they do not get sicker, or ideally, so that they can recover in some way. This is what we need from caregivers for ME/CFS/Long Covid patients and the key to doing this is understanding our inability to "push ourselves".

The people surrounding ME/CFS/Long Covid patients need to understand this most basic tenant of the illness because if they do not, they will cause us immeasurable harm.

And the public needs to understand ME/CFS/Long Covid patients’ inability to "push ourselves" so that when we interact with the public, our needs are met and we are not constantly living on a planet that is failing us or actually trying to stomp us out of existence at every opportunity.

It’s time to wake up world!

We are doing our best. All of us. And there is nothing we can do to physically "conquer" our illness, "overcome" our illness, or "push through like warriors". The same way no one can "push through" a peanut allergy. No one is "stronger" for having a lesser allergic reaction to peanuts. The truth is that we are already warriors, battling not to push beyond physical limits, but fighting an internal battle for radical acceptance of a life stripped of what once brought meaning and purpose to our lives. The world has great admiration for Olympians who push the physical limits of their bodies. And the world has great admiration for disabled Olympians who push the limits of their bodies. It is time for the world to realize what an incredible feat it is to survive with the profound limitations imposed on patients with ME/CFS and Long Covid. To accept a life that for many ME/CFS and Long Covid patients is without ALL of the things we dreamed of our whole lives is no small feat, it requires profound mind training.

When will the world see how much strength, courage, bravery and endurance is required to train to live a life with less of everything that defines life? And when will the world see how much suffering that causes? And when will that translate into admiration, and respect, and empathy, and when will that empathy translate into action that brings about the cure that should have been here decades ago and prevented millions of people from ever getting ME/CFS or Long Covid in the first place and losing their entire lives and futures?

We are warriors and champions, no less than the olympians running, skiing, twisting, jumping, rolling, etc to physical extremes. Training the mind is no different than training the body. And if there were an olympics for mind training we would all be gold medalists.

Love,
Whitney  
Subscribe  
to get my newest blog post sent to your email address
Only blog posts, nothing else. Unsubscribe anytime.

  ME/CFS Resources
   Donate to ME/CFS research
  My Print Store

           Support My Work

< Back

Tags: Awareness

Previous Post    Post 23 / 197    Next Post
© 2025 Whitney Dafoe