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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Whitney Dafoe with syringes and feeding tubes.

When Does Self Care Become Harmful?

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I’m desperate to feel better. I would do anything to feel better and I spend an enormous amount of energy following routines and taking medications and supplements to try to get better.

This desperation to get better is something we all face. We’re willing to try anything that we know doesn’t harm us like GET to get better. But at what point does the energy we put into these treatments hurt us more than they benefit us?

The Devil's catch here is that using energy makes ME/CFS and Long Covid patients worse. So anything we do to try to get better can actually wind up harming us if it requires more energy than we have.

My medication/supplement routine takes a huge amount of energy. It exhausts me. I take supplements both through my Jtube (tube to my intestines) and Gtube (tube to my stomach) as well as a transdermal supplement routine* to try to get better. (I have a paralyzed stomach, or Severe Gastroparesis, and cannot take oral meds so I can only get meds into my system through my Jtube or through my skin)

The topical routine is especially draining because I can’t just take a shower to wash it all off, I have to clean my skin with baby wipes before and again after. The scrubbing of my skin all over often leaves me depleted of all the energy I might have to do something more positive and mentally rewarding in my life.

I have no idea how much benefit topical magnesium oil gives me, for example. I can taste salt in my mouth when I apply it which makes me think it is getting into my system and my blood levels of magnesium look better, but (yay?) is that making me feel better? I also take liposomal minerals through my Jtube. Who knows how I would feel without the magnesium oil routine. But it sure is a burden. Since I can’t shower I have to do a lot of work to apply it in bed; Put a medical underpad and towel under me to keep my sheets from getting gooey from the messy oil, and clean it all off my arms with baby wipes afterwards. This is just one example, but it’s really exhausting and something I dread everyday.

Taking my meds and supplements also takes a lot of energy because I can’t just take a handful of pills. I have to inject each med or supplement crushed and dissolved into water in a syringe (by my caregivers, bless them) into my J/Gtube which takes a half an hour as opposed to the 2 minuts it takes most people to take some pills.

I know a lot of these meds and supplements are making me better and stopping me from getting worse, but I don’t know which ones. And I don’t know which ones are not helping me, but take a huge amount of energy to administer.

We all live with so many unknowns. Since there is no cure and no real treatments for ME/CFS or Long Covid, we are all trying everything we can to try to feel better, and many of these treatments are hacks that just happen to make some patients feel better. I recently heard about patients applying nicotine patches and some patients feel better from them, a good friend of mine says it’s the most beneficial treatment for her. Nicotine patches!

Look at us! It’s so sad and ridiculous and desperate! No fault of our own, if it helps, then it helps, but we are suffering so much, and there are so few answers for us due to systemic neglect from governments and medical systems throughout the world. We are looking everywhere at hack treatments that help us even a little bit. Even treatments like Abilify that transform some patients’ lives (like me) are just happy accidents.

I often wonder when these treatments add up to using so much energy we would be better off without some of them. Not Abilify, because that isn’t too difficult to inject into my Jtube with my other meds in a syringe and I know it helps me. But other treatments take much more energy and are much more ambiguous about their benefit. It’s really hard to figure out what helps and if it’s worth the energy it takes.

I have no idea how to balance the energy it takes to take meds/supplements and apply treatments vs the possible benefit they might be giving me. I just go with my gut, but the problem is that my gut is desperately screaming for help and feels anxious when I think about leaving one of these things out because I worry I’ll get worse. So I don’t know how accurate it is to rely on and I keep taking many of these treatments without knowing what they are really doing.

There is no answer here, but it’s something we all face that is worth acknowledging and thinking about.
  • The desperate situation we are put in due to neglect
  • The impossible medical decisions we have to make everyday
  • The unknowns about our health we face constantly
  • The consequences of making the wrong medical decisions
This is all so stressful and sometimes scary. We have to remember that all we can do is our best in a confounding situation that is not our fault.

I think the best way to navigate this is to listen to our bodies even if they are panicking and desperate and maybe not sending very accurate signals compared to when we were healthy. But we have to listen to what we feel. It is really important not to betray what our bodies are telling us. If something feels wrong or bad, we should stop it. But at the same time we also can’t do nothing and rot in bed. We need to try to get better and avoid getting worse. But in a thoughtful, mindful way that hopefully doesn’t do more harm than good.

I believe we should try our best to take meds and supplements that help us, but listen to our bodies and follow what we feel is best. But even still, I am left feeling quite uncertain about the routine I follow. And that uncertainty is something we all have to live with until better treatments are found.

Love,
Whitney  

*My transdermal supplement routine is part of a treatment plan I’m working on with a researcher named Joshua Leisk who has a routine that involves oral supplements, transdermal supplements like magnesium oil on my arms, an anti-microbial solution he came up with that I apply to parts of my body where the skin is infected, and specific probiotics. It’s part of a protocol he has developed that is helping some patients. You can learn more about his protocol on his website.

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