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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How Are Hospitals Killing People?

How have we come to a place where hospitals are not only abusing people, but killing them? These are the most basic centers for health, healing and care in our society. For them to be abusive and killing means there is something seriously wrong with the NHS in the UK.

Everyone and anyone should be able to go to a hospital and be treated for any condition. They should be centers of comfort, wellness and care. We should feel safe going to a hospital knowing they are the best place in the entire world to be when we are sick or unwell.

But instead, when you have ME/CFS, hospitals are the stuff of horror stories. They blame, accuse, judge, then they misdiagnose, abuse, mistreat, and physically torture us like victims in a serial killer movie. The walls of UK hospitals are soaked in the blood of dead ME/CFS patients.

And hospitals in other countries are no better. But we deserve better. Humanity deserves better. ME/CFS and Long Covid patients deserve better.

END THE HORROR

An 18 year old girl named Millie McAinch recently went to the Royal Lancaster Infirmary in the UK because she was not able to eat. She has severe ME/CFS and her stomach is not functioning properly, not allowing her to eat enough calories to stay alive. So they had to go to the hospital to have a feeding tube installed.

But instead of giving her a feeding tube, the doctors at the Royal Lancaster Infirmary tried to section her for an eating disorder, prevented her family from seeing her and kept her in the exact opposite conditions dictated by the NICE guidelines designed to prevent ME/CFS patients from being abused and getting worse while in the care of medical professionals. So Millie's case of severe ME/CFS worsened every single moment.

The doctors would not accept a diagnosis of severe ME. And to this day, they refuse. Millie has been in the hospital for I believe 2 weeks now simply because they refuse to give her a feeding tube.

The situation is not complex, you don’t even need to understand anything about ME/CFS to look at her vomiting up all of her food and realize she needs a feeding tube. But the doctors and staff would not at first even read the NICE guidlines or try to educate themselves about the illness Millie has.

Installing a feeding tube is a 1-2 hour procedure, which I know because I have a Jtube and have had this procedure done on myself in hospital at least 10 times. Feeding tubes break and need to be replaced every 6 months or so, sometimes less. If the doctors at Royal Lancaster Infirmary chose to, they could install a feeding tube in Millie today and release her from the hospital tonight.

Severe ME/CFS patients are being killed at an unknown rate in UK hospitals. And no one is doing anything to stop it.

Since writing about this issue I have spoken to countless patients who have barely managed to survive this experience and have horror stories about being kept against their will in UK hospitals for this same reason; The doctors refused to accept the diagnosis of ME/CFS and so kept patients at the hospital because they would not give them a feeding tube and at the same time could not release them because the patients could not eat enough to stay alive. These people were literally tortured sometimes for months and are permanently traumatized to the extent that they will never recover from the experience.

If a doctor killed a patient with heart disease due to treatments based on their own personal judgments and beliefs while ignoring all the facts and information and knowledge available (even on the internet) all doctors involved would be fired and sued for huge sums of money.

This is more enraging testament to the way even doctors with degrees in medicine think they are entitled to an opinion about ME/CFS without any kind of knowledge about the illness; Based on "beliefs" alone. And this infuriates me. No one treats cancer, HIV, Heart Disease, MS, Lupus or any other health condition when they know nothing about it. Uneducated beliefs and opinions are the reason we bled patients with leaches in the 1800’s. Millie's treatment at the Royal Lancaster Infirmary and the experience of countless other ME/CFS patients at hospitals around the world is no different than bleeding someone with a leach in a modern hospital in 2024.

Clearly the NHS staff and doctors are not "bad people", I don't believe in "bad people". The problem starts with a lack of education about ME/CFS from the top of our society, but this is then escalated by bigoted, ignorant and extremely arrogant health care professionals who inflict treatments based on uneducated, untrained opinions on extremely sick or dying patients.

The world deserves better.

END THE HORROR

#EndMECFSmalpractice

love,
Whitney  

❗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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