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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Don't Let Another ME Patient Die In Your Care

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Dear Royal Lancaster Infirmary,

Millie McAinsh is a patient in your care and she needs a PEJ feeding tube right now. Today.

I am a severe ME/CFS patient who has a PEJ feeding tube, and I want to speak to how wrong it is to refuse to give Millie a PEJ tube.

If I did not have a PEJ tube I would starve to death, no question. I physically cannot eat, my nervous system is so sensitive that even a crumb of food would permanently hurt my stomach and make it more sensitive and possibly make it so I could not get liquid food through the feeding tube anymore and lead to my death.

My stomach follows the exact same pattern as what is called Post Exertional Malaise in ME/CFS patients (PEM). Please use Google and learn about the physical illness Millie has called Myalgic Encephalomyelitis (ME/CFS). Google “ME/CFS PEM”.

ME/CFS patients have a physical energy limit, which is much lower than healthy people. Severe patients like Millie often have 1% or less of the energy they had when they were healthy. I have something like .2% of the energy of my healthy self. Yes, that is point-two-percent. And I used to be healthy. I grew up playing all sports including running cross country.

When ME/CFS patients go over their energy limit, 2 things happen. Their symptoms get immediately worse for a period of time (this is PEM), and this energy limit gets lower permanently. So every time an ME/CFS patient goes over this limit, the limit goes lower.

The only way for an ME/CFS patient to live a sustainable life and not continue getting worse in a downward spiral is to stay below their energy limits.

My stomach follows this exact same pattern. And Millie’s stomach likely does as well.

If I push my stomach, and go over my stomach’s limit ie. eating more than my stomach's limit, which is now at zero, it gets more sensitive.

It’s a trigger, and every time this trigger gets pulled, the whole system gets more sensitive.

This pattern happened with my stomach in 2013, but I did not get the care I needed, I kept trying to eat food to get calories and kept making tiny mistakes and hurting my stomach and it kept getting worse until I was starving to death and could only take tiny sips of maple syrup to try to keep my brain somewhat functional. I weighed 115 lbs. when I finally got a feeding tube and I am 6’3".

What you are currently doing to Millie is actually incredibly dangerous and likely the reason why hospitals kill severe ME/CFS patients in the UK when they refuse to give them a feeding tube. Yes, Millie could die and you will be 100% responsible.

Millie is currently having to force too much food into her system through her mouth and stomach, which could just continue to make that whole system more sensitive. So the longer Millie is forced to eat food orally, the more danger she is in of her digestive system completely shutting down. And the less food she will likely be able to eat orally in the future after you inevitably HAVE to give her a feeding tube because it is what she needs.

Every single time Millie forces food into her overly sensitive stomach, it risks making her worse.

She needs a PEJ tube right now, this minute, so she can stop eating more than her stomach’s limit trying to get the calories she needs to stay alive.

Every minute you wait is just one more minute of malpractice and abuse exacerbating Millie’s stomach sensitivity and likely making it worse. You are forcing her to hurt herself in order to stay alive.

If Millie can get a PEJ tube put in now, while she can still eat SOME food, she might be able to slowly build back up to eating all of the calories she needs. Slowly, over months or years.

But if you keep delaying, Millie could wind up like me and not be able to eat anything anymore for years to come or for the rest of her life.

Or she could wind up worse than me and not be able to even tolerate a feeding tube.

People seem to think that digestion is so normal and "natural" it can’t go wrong. But it can. The body can reject food like it is poison. Millie could just throw up all nutrients put into her system with the feeding tube or shit it all out with diarrhea non stop until she dies from malnutrition.

This is very real and very urgent.

Millie needs a PEJ tube right now, this moment. Not in a few hours, not tomorrow, not in 5 weeks when she is dead. Right now.

And Millie needs a PEJ tube not an NG tube. The reason being that the tube needs to bypass her sensitive stomach where the nerves are overreacting to food input. If I had to pump all my food into my stomach I would throw up constantly and would not be able to get enough nutrition. This is very important. An NG tube is not sufficient. The best would be a tube like mine, which has both a Gastric port and a Jejunum port so Millie can get the nutrients she needs to her Jejunum, but still get as much food into her stomach as possible to keep it active and keep beneficial flora alive.

An NG tube that leads to her Jejunum also does not work for Millie’s health needs. An NG tube requires Millie to sit upright or she gets nauseous and can’t tolerate food intake. But Millie cannot sit upright due to Orthostatic Intolerance, she needs to lay down flat. The point here is to give Millie the medical treatment she needs to get food. We are talking about food here, a basic human necessity. An NG tube to her stomach or Jejunum does not work, Millie needs a PEJ tube to get nutrition to stay alive.

I have had a PEJ tube here at home for 7 years now and me and my caregivers have had no trouble maintaining it. We clean it regularly and are careful not to pull on it. That’s it, it’s a simple medical device. It is perfectly fine for Millie to have a PEJ tube at home, she does not need hospital monitoring to have a simple PEJ tube. I have had zero infections or issues of any kind and I don’t even notice the PEJ tube is there most of the time.

The Royal Lancaster Infirmary is also causing Millie general harm to her overall health by keeping her in the hospital unnecessarily and not letting her mother see her to make sure her needs are met. As I have explained, ME/CFS patients have a reduced energy limit. When ME/CFS becomes severe like in my case and Millie’s case, this limit becomes so low that just small amounts of mental exertion forces the brain to use more energy than is available and the patient gets worse. Being stuck in a hospital full of Doctors and Nurses who do not understand her illness is a worst case scenario because she is being constantly subjected to way too much mental stimulus and is constantly way over her energy limits. Her health is already going to dramatically deteriorate from the damage you have already done to her, the question now is how much worse you are going to make Millie. Will you stop before she is so severe she cannot recover?

A 27 year old severe ME/CFS patient in the UK named Maeve Boothby-O’Neill recently died shortly after being held at a UK hospital because of the exact same way you are treating Millie. Death from malpractice is not something to take trivially. Millie will die because of your actions if you do not change course immediately.

The Royal Lancaster Infirmary needs to read the NICE guidelines about how to treat ME/CFS patients, and follow them. A lot of well educated researchers about ME/CFS wrote the NICE guidelines - people who understand the illness Millie has - and they need to be followed or you are intentionally disregarding her medical needs and making her health condition worse.

This is ENTIRELY the Royal Lancaster Infirmary’s fault. Having a PEJ tube put in is a very simple, routine, 1 hour procedure. There isn’t even any need to keep her overnight. If you chose to, you could install a feeding tube right now, and have Millie home this evening where she would be back in a safe environment able to limit her exposure to stimulus and now able to get all the nutrition and calories she needs without risking her stomach getting worse.

The Royal Lancaster Infirmary has a choice. You can do your job and perform a simple, necessary medical procedure for a sick 18 year old girl, or you can refuse and cause permanent harm to Millie or kill her. And that death will be 100% your fault.

The entire world is watching you make this decision and will hold YOU accountable for what happens to Millie.

Millie needs a PEJ feeding tube TODAY. Make the right decision and do the simple procedure for this poor sick girl and then let her go home with her loving mother.

Signed,
Whitney Dafoe
Severe ME/CFS patient
www.whitneydafoe.com/mecfs
Palo Alto, California, United States

PS. A copy of this letter is being overnighted to the Royal Lancaster Infirmary in hopes that hearing from a patient exactly like Millie will give them perspective and see reason.

❗CALL TO ACTION❗

I would like to ask everyone who is able, to send a copy of my letter to the Royal Lancaster Infirmary where Millie is being held/"treated".

Let’s FLOOD THEM with copies of this letter to make sure they actually read it! Based on their unbelievable incompetence about ME/CFS, I have doubts about them opening letters or reading them.

And if the hospital knows that an international community endorses this letter that makes it much more powerful. If you are able, you can add your signature to my name, or a personal note from you. But that’s not necessary if you are too sick.

Click anywhere here  touch_app  to go to my page for Millie, easily download the letter, copy the address and learn what else you can do to help

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