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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25-02-17-me-cfs_eating-again-after-jtube

I Started Eating Food Again in 2024...What Will 2025 Bring?

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I started eating real food again in 2024!

I have avoided saying anything about it because I (and my doctors) have no idea why it has happened and being public about it always felt like it could jinx it or something like that. MECFS is so full of mysteries. If we don’t know what brings us something, how can we know what might take it away?

It started when I began developing an insatiable sense of thirst while the food pump was running, bypassing my paralyzed, super sensitive stomach and pumping liquid Peptomen formula into my Jejunum intestines. For the last 11 years since 2013, I have never felt hunger or thirst, my stomach has always felt full. Even if I went days without eating I would get weak, but not feel hungry. Even if i went without water, I would feel a craving for water or smoothies, but my stomach would still feel full. So this was very new.

Back when my stomach was collapsing, I had an experience where i needed to have blood drawn, and my blood is very thick, the only way to actually draw any blood was for me to chug water beforehand. Otherwise you literally could not pull blood out of my body it was too thick for a needle. So despite only being able to drink a few sips before my stomach felt full, I had to drink a whole liter of water so I could have blood drawn for important tests (well, they seemed important at the time 😉). And so I just chugged a mason jar full of water - fast. And somehow the feeling of necessity of it combined with chugging the water fast - it wound up being ok.

So I remembered that and one day this new profound sense of thirst in early 2024 became so strong I just decided to chug water again, having faith in the feeling of thirst, and hoping if I chugged the water like that again it would be ok. And it was fine! I chugged a whole large mason jar of water without stopping, after not drinking even a drop in 11 years. It felt INCREDIBLE! It was like nectar of the Gods flowing through me.

So I kept drinking water every time I felt thirsty like this, but never when I didn’t. But I didn’t chug, I went more slowly and carefully. This was not a frat house for MECFS water starved teens 😂

Slowly this built and I tried a bit of juice and that was ok so i continued drinking more juice of different kinds.

And then I started feeling hungry!

The first thing I tried eating was whole milk organic yogurt. Because that was always the easiset thing for my stomach to eat and also the last thing my stomach was able to eat in 2013. So it made sense. (For those scrutinizers out there, yogurt is partially digested by the lactobacillus bacteria and thus very easy to digest.). And it was fine! And DELICIOUS!.

If I remember right, the next thing I ate was dark chocolate, of all things. 😊 This makes less sense, but let me explain.

In 2010-2013 before my stomach collapsed I was trying everything to try to feel better and I had very bad experiences listening to dietitians and trying to follow prescribed diets like "carnivore" or "cave-man" or "keto" etc. Anytime I went against what my stomach craved or what felt good for my stomach to try to follow a pre-prescribed diet it always just hurt my stomach and did not make me feel any better mentally or physically. In fact, this probably caused the decline of my stomach functioning to needing a Jtube. It turned out that what would have been best is to just listen to what my stomach wanted, craved and what felt good. So I was determined this time to avoid any prescribed foods if I was going to eat again, and just eat what felt right. So I ate some chocolate! And that was INCREDIBLE too!

I started eating some chocolate everyday.

And then I started trying some baby food pouchies. They make some much better quality baby foods these days compared to last time I had been in a grocery store. And these were all INCREDIBLE too! Apple sauce, sweet potatoes, root veggie combos, etc. All organic and tasty.

I believe I then tried potatoes or baked sweet potatoes, made by my caregiver. This was one of the most comforting foods for my stomach before it collapsed. Cut in discs, and covered in oil and cinnamon and ginger. YUM!

So I slowly kept going like this, listening to my stomach, not doctors or dietitians or internet fads. Just my stomach. What sounded good and worked before my stomach collapsed, I tried eating again, carefully and slowly.

I have now stopped the Peptamen food forumula completely, and get all my calories from real food!

...Rice cakes with nut butters, honey and sea salt, veggie sushi, stir fried vegetables with sesame oil and tamari, baked sweet potatoes, gluten free crackers with hummus, even gluten free crackers with Gruyère Cheese! (because, well it’s delicious, but also back before my stomach collapsed I could only eat hard cheeses) And more.

It has come time that I feel stable enough with this new change that I feel comfortable telling you all. And I want to tell you because I want you to hear this story!

I could not eat even a crumb of food for 11 years! That might wind up being 15% of my whole life or more! And now my stomach is eating plenty of calories. In fact, I have gained 60 lbs since eating again. (Both me and my doctors think my body is freaking out a little and storing calories as fat after being on the liquid diet for so long and not eating real food. I’m hoping it won’t continue, and I can loose some of it, but I also know weight gain is common for MECFS patients so I’m trying to accept it too, knowing I’ll hit the gym as soon as I get better).

Who out there thought my stomach could start working again after everything I had been though? Please raise your hand.

If my stomach can recover back to normal functioning after 11 years of absolute shut down, what can the rest of our bodies do? What can our muscles do again? What can our brains do again?

A lot of people think (and some careless "Twitter Doctors" say) that the symptoms of MECFS and Long Covid are permanent because of various limited test results or "data" like brain scans.

I want you to read this story and think about the possibilities. We do not know enough about MECFS or Long Covid to know if anything is permanent. We don’t even know enough about the human body. How many times has the medical and scientific world thought they know everything about something only to discover they were completely wrong?

None of the people who say that MECFS/Long Covid causes permanent damage would ever have believed I would ever eat again. But here I am.

If I started eating again in 2024, the question I want to ask you all is "what will I do in 2025?"

And I also want you to consider the very real possibility that none of your symptoms are permanent. Even the brain. I don’t care what brain scans show. We don’t know enough. The brain is extremely adaptable, re wirable, re purpose-able, etc. Don’t let the Debbie Downers get you down.

I personally believe that no MECFS/Long Covid symptoms are permanent, that all of them are reversible and that we can get ALL OF IT BACK.

Of course I don't know what has led to this recovery with my stomach, and I do think an intervention in the form of a treatment or a cure will be necessary for most of us to fully recover. But I do think we can fully recover.

I love you all.

  Whitney

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