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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25-07-07-Whitney-Dafoe-Big_Ugly_Bill

Dear America

Accessibility:   Listen to this post


   

Listen to this post on my podcast                

Dear America,
My name is Whitney Dafoe. I have a chronic illness and depend on Medicaid to stay alive. The "Big Beautiful Bill" that Trump signed into law on the 4th of July will take away insurance from an estimated 17 million people (1), mostly from people on Medicaid. I want to tell you how losing Medicaid would impact me directly.

I am bedbound and living with my parents at age 42 because I am too sick to take care of myself. My parents have enough money saved to pay for out of pocket costs for necessary care for about 2 more years and then we hit a financial cliff. Because Medicaid as it is doesn’t cover all of my necessary medical expenses. But my government just voted to cut coverage even further and remove it entirely for 17 million Americans (1).

Will I lose Medicaid? I don’t know, the bill is intentionally convoluted to hide its real impact. I know that the bill claims to only "eliminate fraud and abuse" (painting images of 30 year olds surviving on Medicaid in their mother’s basements) by implementing work requirements and other hurdles that individuals have to go through to get covered by Medicaid, but study after study has found that while there is fraud and abuse -5-10% lost- it is almost all from institutions implementing elaborate fraud schemes, not individuals (2). Arkansas implemented similar work requirements to the "Big Beautiful Bill" to combat nearly non-existent fraud from individuals and it led to 18,000 people losing insurance, and no increase in people going back to work (3). Since the source of fraud is not coming from individuals, adding red tape just makes it more difficult for the weakest among us to get care, while fraud schemes set up by institutions can easily work around the requirements. The failure of the laws in Arkansas should be a warning sign for what the "Big Beautiful" Bill" will do to our entire country.

If I lost Medicaid, my parents would have to sell our house to pay for medical expenses that keep me alive. We have lived in this house since I was 1 year old. This house was built in 1891 and my parents bought it run down and have spent a lifetime fixing it up.

I grew up healthy, played sports, did well in school, had many interests and passions, and lived on my own after college until I was 27, when I had to quit what would have been a very successful wedding photography business because I became too sick to be that physically active. I would likely have made 6 figures that year. But I was forced to stop working and move in with my parents at age 27 to stay alive.

I have spent the last 10 years making the room I live in suit my medical needs and support being healthier. Moving is not physically possible for me. My health would never recover from the physical toll of trying to organize all of my necessities and belongings and move them to another house. In fact, I am so sick that the move alone might kill me. And even if I managed to somehow move, I would wind up permanently sicker, likely unable to even move in bed without help (I have been that sick before). This video shows what it takes for me to just get from my bed to the hospital for necessary care: https://youtu.be/OZbBSvde2ZQ

I have been unable to speak, unable to drink water or eat food due to a paralyzed stomach, dependent on tube feeding and IV fluids since 2013. And I JUST had some miraculous breakthroughs with my health and am eating real food again and I am off the feeding tubes. If I had to move, I would not only lose these gains, but go back to a living hell of deathly sickness.

America is one of the richest countries in the world. America can afford to take care of the weakest among us like me. But the "Big Beautiful Bill" does not even save America money. It is estimated to add $3 trillion to the national debt over the next decade (4). Which will incur $600-$700 billion in added interest payments to our national debt (4). This deals a death blow to our children who will have to pay it all back.

So what is this bill actually doing?

It is taking healthcare away from people like me who need support to stay alive, and giving that money directly to the richest people and companies in the country who don’t even need it.

What’s more, the impact of taking away this healthcare will be devastating for those in need, making millions of people’s quality of life dramatically worse and killing thousands or millions of people from lack of needed care (yes, when sick people go without care, many of them die (5). Meanwhile, the money being given to the richest won’t even be noticed because it is insignificant compared to the wealth they already have. When you have billions, millions means nothing. It is like taking 1000 wheelchairs away from disabled people to pay for a new car for someone who already owns 15 cars. It is like throwing a life raft to a rich person drinking champagne on a yacht and ignoring 10,000 poor people struggling to stay afloat swimming in the ocean after a shipwreck. The 16th car will have an insignificant impact on the person who already owns 15 cars and the people on the yacht won’t notice the life raft, but those 1000 disabled people will, without a doubt, notice having no way to get to the kitchen to get food and the people treading water will drown without that life raft.

For those that say "Good thing I’m not disabled," please consider; No matter how well off you are right now, you are one accident or illness away from becoming temporarily or permanently disabled. I was. Disability is the only minority group you can join at a moment’s notice with no warning or predisposition.

What are we doing America?

I don’t care what party you are a member of, whether you are conservative or progressive. Whether you support Trump or not. When has taking from the poor and giving to the rich been something anyone ever actually champions? How is this ok? How can we do this as a country?.

The only people this bill actually helps are the politicians serving the billionaires who bought them. But at what cost? At what point do we say enough is enough and demand that our country serve all Americans and not just the lucky few who have profited from America’s wealth the most?

Warm Regards,
Whitney Dafoe
https://www.whitneydafoe.com

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Sources

(1)

https://www.kff.org/quick-take/about-17-million-more-people-could-be-uninsured-due-to-the-big-beautiful-bill-and-other-policy-changes

https://www.cbpp.org/research/health/by-the-numbers-senate-republican-reconciliation-bill-takes-health-coverage-away

https://www.washingtonpost.com/politics/2025/07/01/least-17-million-americans-would-lose-insurance-under-trump-plan

(2)

https://www.gao.gov/assets/gao-18-598t.pdf

https://oig.hhs.gov/documents/hcfac/10087/HHS%20OIG%20FY%202023%20HCFAC.pdf

https://www.nhcaa.org/tools-insights/about-health-care-fraud/the-challenge-of-health-care-fraud/

(3)

https://pubmed.ncbi.nlm.nih.gov/32897784/

https://www.urban.org/urban-wire/new-evidence-confirms-arkansas-medicaid-work-requirement-did-not-boost-employment

https://www.cbpp.org/research/health/pain-but-no-gain-arkansas-failed-medicaid-work-reporting-requirements-should-not-be

(4)

https://www.cbo.gov/publication/61486

https://www.americanactionforum.org/insight/cbos-score-of-the-house-passed-one-big-beautiful-bill-act-a-closer-look

https://www.crfb.org/blogs/senate-obbba-charts (this estimate is $4-$5 trillion)

https://www.aljazeera.com/news/2025/7/4/when-will-trumps-big-beautiful-bill-take-effect-heres-what-comes-next

(5)

https://keck.usc.edu/news/new-research-analysis-predicts-that-reductions-in-medicaid-access-could-result-in-poorer-health-outcomes-including-increased-deaths

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2825%2900761-5/fulltext

https://programbusiness.com/news/new-study-finds-medicaid-expansion-associated-with-lower-mortality-rates

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