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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Whitney Dafoe holding a binder with a letter showing.

Help get my letter to President Biden - a second plea

Last week I asked for help getting my letter to President Biden and only a few people responded offering to help. I’m sorry but this isn’t ok. Congress is currently debating a huge funding bill and this is a critical opportunity to finally get the funding for the cure we all dream of. If we can get $250 million dollars in NIH funding per year for ME/CFS, research will move forward at an exponential rate and we will find a cure soon.

I know some of you are too sick to reach out to your local representative, but there are many people following this page with mild ME/CFS, and many carers and supporters as well who could help with this. The amount of energy you all put into dealing with ME/CFS everyday is far more than the energy it would take to reach out to your local congressperson or Senator, ask them to hand deliver a letter and get one to them. I have put a huge amount of work into making and printing these binders. I need your help to finish the job and get them to Biden.

Please think about what is at stake and find the time to help with this initiative. I have 30 copies of these binders but they are very expensive to make due to high quality printed images, so I can only send one to you if you contact your representative and know they will deliver it to Biden. So start by contacting your representative and explain about ME/CFS, the lack of funding, and this binder and if they will deliver one to Bien please email me here.

I will ship one to you for free.

To make this easier for you, here are links to find your local representatives and an email you can copy and paste to send them.

Getting your Senator to deliver a Binder is best, but a Congressperson is wonderful too.

To find your Senator, go to this website, enter your state and other info in the drop down menus at the top of the page.

https://www.senate.gov/senators/senators-contact.htm

To find your local Congressperson, follow this link, enter your zip code and it will show you your representative with a link to their website. Phone is best, but you can contact them by phone or email, whichever is possible for you and available on the site.

https://www.house.gov/representatives/find-your-representative

Here is an example email to send, or use as a guide for what to say on the phone (a phone call is better if possible):

———————————————————————————————

Dear (representative’s name),

My name is XXXXX and I have a serious chronic illness called Chronic Fatigue Syndrome, otherwise known as Myalgic Encephalomyelitis (ME/CFS).

I have a letter written to President Biden by a prominent member of the ME/CFS community named Whitney Dafoe that is spiral bound into a binder and includes a graphic of the funding disparity, and 100 endorsements of the letter from ME/CFS researchers all over the world including many Nobel Laureates and world renowned, award winning scientists. I would like to meet with you or speak with you or your health legislative aide to organize getting you this letter. I would like to ask you to hand deliver it to President Biden to make sure he reads it.

ME/CFS affects 4 million Americans. Twenty-five percent are estimated to be severely affected, being bedridden with little to no functioning. Studies have shown this population to have the lowest functioning of any chronic illness, comparable to terminal illnesses like end-stage AIDS or end-stage renal failure. There is no known cause or cure, though researchers have found unique abnormalities in the immune system, circulation system, ATP (energy) production, physical response to exercise, and autopsy findings report dorsal root ganglionitis - a type of inflammation of the spinal cord. Some people improve with time but many are bed-bound for decades. It is estimated that only 4% of those with severe ME/CFS have any type of recovery. To die of this illness is unusual. To hover in an in-between state where one experiences a 'living death' for years or decades is quite typical.

Despite the ravages of ME/CFS, it is one of the least funded illnesses. Multiple Sclerosis is less severe in its impact on patients' quality of life, and affects half the number of people. Yet it receives $100 million per year from NIH for research. HIV receives $28 billion per year and affects one quarter of the number of people. ME/CFS research received $15 million last year. With so little funding, there is no hope for the millions of people suffering from this illness.

Here is a link to a graphic showing the funding disparity of ME/CFS compared to other illnesses.

https://www.whitneydafoe.com/mecfs/funding_graphic

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is an extremely devastating illness that takes and takes and takes until there is nothing left but flesh and bone. I’ve lost my friends, my career, my hobbies, everything that brought meaning to my life and all sense of humanity.

ME/CFS is defined by what is called post exertional malaise. This means that ME/CFS patients have a reduced amount of energy compared to healthy people. But most importantly, when an ME/CFS patient pushes themselves over this reduced limit, they don't recover like healthy people after some rest. The illness gets worse, often permanently. There are many more symptoms including inability to think clearly, muscle and nerve pain, poor sleep, sensitivity to colors, sounds, light, noise and other stimulus that forces the brain to use more energy than a severe ME/CFS patient has available, digestive problems likely caused by nervous system malfunction that controls the stomach muscles. And many more.

As a nation, we need to invest in ME/CFS. It costs America an estimated $25 billion per year in lost productivity and medical care. ME/CFS destroys millions of lives, tears families apart and shatters dreams as people are isolated in bedrooms, nursing homes or left homeless with very little medical or societal understanding or support. All genders, races, ages, and socio-economic backgrounds are affected. Anyone could wind up sick with ME/CFS and just drop off the map. And we lose everything that person would have become or contributed to the world.

As a nation, we need to invest in ME/CFS.

(Optional: add your personal story and experience with ME/CFS, for example how it has affected your life and what you have lost)

Millions of Americans are suffering horribly from this disease and with so little funding there is almost no hope for any of us to recover. With proper funding, researchers could find a cure. This is a curable disease, but we don’t even have treatments right now because there is so little research funding.

Please help these millions of suffering patients and hand deliver Whitney Dafoe's binder to President Biden.

Thank you for your time,

(Your name)
(Your email address)
(Your phone number)
(Your address)

———————————————————————————————

Please, please find the time to reach out to your local congressperson or Senator, to ask them to hand deliver a binder with my letter to President Biden.

This is our chance. Let’s act now and take advantage of it. Congress is currently deliberating a huge funding bill and if they know the grave injustice and suffering faced by ME/CFS patients it is within their power to very easily add $250 million per year for NIH funded ME/CFS research. Now is our moment.

Thank you for everything you do.

Love,
Whitney

Here are some example pages in my binder to President Biden…


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There are many more pages of endorsements, these are the first two…

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