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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My Jtube Broke...Going To The Hospital

One of the scary things about having a Jtube is that when it breaks, there is no great care system set up for getting it repaired quickly, it’s just treated like any other procedure. It is the same with a PICC line (a permanent IV sewn into my shoulder that goes to a big vein near my heart and can be left in, unlike an IV that goes into a small vein and only lasts a day). But if my Jtube breaks and cannot deliver anything to my stomach or Jejunum, it means I can’t get any meds or food until it is repaired. And if my PICC line broke, it would mean no fluids until it got fixed.

And the way the system works, they require me to make an appointment to come in, there is no urgency or sense of emergency. So if it breaks on Friday or Saturday, I have to wait until at least Tuesday before I can get an appointment to have a new one put in. I can’t go to the ER because they have no idea how to put either one in and I’d wind up just waiting for an appointment in the ER instead of waiting here at home.

Our medical care system is not setup for bedridden or homebound people living with long term illness.

So far I have been lucky. But this time it broke on Saturday morning. The balloon in the Jtube they inflate with saline that holds the jtube inside me broke, and the entire jtube just fell right out of me! Leaving a hole in my stomach and me holding the jtube hanging in my hand like an organ I had ripped out of myself.

Luckily, the last time I was at the hospital I had the surgeon show me the new Jtube before he put it in, and show me how the part inside of me works. The tube is actually 2 tubes in one, with a divider running down the middle to keep them separate, and there’s a port for each of these tubes. One goes to my Jejunum or large intestine (Jtube) and the other goes to my stomach (G tube [gastric]). So I had an idea what I was looking at when it fell out. I can’t reconnect the Jtube part because it has to be set with an ultrasound or some such device. But the G tube part is rather simple. It’s just 4 holes in the part of the G tube section where it runs through my stomach on the way to my large intestine/Jejunum. And there is a block in that part of the tube after the 4 holes, so that anything put into the G tube is forced out through the 4 holes, spreading the contents out into my stomach.

So I MacGyver’ed the tube and cut it after this block, removing the part of the tube that goes to my Jejunum so it wouldn’t be moving around free hitting the sides of my stomach. And then I put some oil on the hole in my stomach to lubricate it, and I just inserted the tube back into the hole in my belly and taped it on so it wouldn’t come out.

And I thought "Really? Is my body that simple and mechanical that I can just stick a tube into a hole in my stomach, and then pump food into it and it will go into my stomach and feed me??" It feels so mechanical, like fixing a car. I feel like a science project.

But it seems to have worked. I usually pump all my Peptamen whey food formula (mixed with a ton of supplements) and inject meds in syringes into my Jtube (large intestine), but now my only choice was to have it pump into my stomach. Would that be ok? Would it permanently worsen my stomach?

It seems to have been ok so far, though uncomfortable and nauseating.

Right now I am waiting for the ambulance to come pick me up and take me to the hospital to have a new Jtube put in. These trips to the hospital are bittersweet. It’s partly really exciting to get to see the sky and trees with their leaves and branches moving in the wind. It’s the real world! And it’s so so beautiful. And I see a world full of people just buzzing with energy. Walking all around, talking, texting, joking, laughing, working. They all have full lives of some sort - families, loved ones, friends, careers, independence. And they all burn energy like it’s free! They have no regard for energy use, they’re all just buzzing with energy, throwing it away seemingly. Energy that is so so sacred to me and which I spend almost all my time thinking about how to use and how to carefully doll out in tiny little bits; These people just gobble it up without a thought. It’s reallly nuts to watch. Why doesn’t my body work like that? I’m tired of dolling out bits of energy like crumbs of stale bread. I want a loaf of fresh German brown bread like all these people!

It’s a real marvel to witness the world after closing it off in my mind for the sake of self preservation and survival. if I don’t think about the world, I don’t long for it constantly. So I don’t think about it except as an abstract concept.

So the world is truly incredible to witness. But when it is all done, i have to return to my prison cell. I open my mind up to the world and then I have to spend days closing it back down and limiting my thoughts to this tiny room again. It’s so devastating watching the top of the door frame slide over the sky as I am wheeled back into my room.

It takes me days to re-calibrate my mind.

And there is also the fear of getting worse from the outing. I take a huge dose of Ativan right before getting in the ambulance and I also get Fentanyl and Versed during the procedure which also calms my nervous system and then I take a second dose of Ativan when I get home. And all of that has in the past protected me from getting worse despite all the stimulation. I’m also very lucky to go to a wonderful hospital full of nurses who know me and I get a private room, so I’m not stuck listening to people talking while I wait, which is sometimes hours.

I am always so stressed waiting to go to the Hospital. I like my routine. I mean I also hate it, I want to be free of it so badly, but given what ME/CFS does to me, I really like sticking to my routine and being able to have moments of mental activity to write things like this. The hospital trip is such a deviation from my whole existence it is scary. The drugs help, but it is still such a crazy experience that I wish I didn’t have to deal with.

Please say a prayer for me today that I don’t get hurt or get worse and that I can find peace again returning to my prison cell after seeing the buzzing, beautiful world.

Love,
Whitney  
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